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Chuckster on 28 August 2018

Category: Blood tests

Replies: 8

Last updated: 29 August 2018

Lastest Blood Test Results: On 50MG of Sprycel Daily.
by Chuckster (Aug 29)

Hi!
Check with the lab that is drawing your blood/and testing.
Depending on what tests your Doctors/ Oncologist is ordering, you should request and receive a copy of ALL of your blood work/

by Felix (Aug 29)

Hi Chuckster ,great news on all your zeros well done. Everybody seems to get so much information about their blood results FISH ,PCR ,and every other abbreviation connected to CML .When I get

by LouiseS (Aug 29)

Great news Chuck ! Hope you are felling pretty much back to normal now :)
louise

by Chuckster (Aug 29)

Thank you very much to all!
*Re Vit B supplement +Iron etc. I will be seeing my oncologist today
I will ask about it as I already take a Multi Vitamin Suppl but it has no IRON in it.
Category: Blood tests

Replies: 8

Last updated: 29 August 2018
Stacey Doubblestein on 20 August 2018

Category: Blood tests

Replies: 7

Last updated: 24 August 2018

WBC count dramatically reduced 3 weeks on Gleevec
by LouiseS (Aug 24)

I think it’s good news when you don’t have an enlarged spleen. No spleen enlargement means your CML should be easier to treat ( or at least this was considered the case before second gen TKIs were

by Tbrand (Aug 23)

My spleen was normal, any idea why?

by Stacey Doubblestein (Aug 23)

My husband's is 13 cm beyond and his doctor explained that to mean two times it's normal size after his ultrasound and measurements

by MartinZA (Aug 21)

It took forever for my spleen to get back to normal - at least 3 months. I'm now almost three years in and still have discomfort in the spleen area. So don't worry! It is normal for this to take
Category: Blood tests

Replies: 7

Last updated: 24 August 2018
Syd822 on 8 August 2018

Category: Blood tests

Replies: 3

Last updated: 8 August 2018

Possible Cancer...
by Romo (Aug 8)

Normally a bone marrow test is ordered to determine
what “Type“, of Leukemia the patient has.
It also can assess the stage of that type of leukemia.
There are four types of leukemia. Each type

by Syd822 (Aug 8)

With the FISH test I only had to give blood for. She said that depending on the results from that then I would do the bone marrow aspiration. I am also uncertain if the results are done since she

by David Fitz (Aug 8)

Hi there,
It's a pretty scary time when you are not sure what's going on inside of you. We all understand that phase of things.
To me it looks like your doctor is running a number of tests to look

by Syd822 (Aug 8)

So a few months ago I went to my physician for a yearly check up and she does blood tests every year. When she did this blood test my Iron was low in which it showed that I was Anemic and my white
Category: Blood tests

Replies: 3

Last updated: 8 August 2018
Anonymous (not verified) on 26 July 2018

Category: Blood tests

Replies: 3

Last updated: 28 July 2018

Clarification on Quantitative and qualitative PCR
by Anonymous (Jul 28)

I'll ask my oncologist to order on the next PCR on both isoforms p210 and p190. It seems the safest path. Thanks

by alexmcpee (Jul 28)

Hi Silas,
My understanding is at diagnosis they only order checks for p210 which is the hallmark of CML. A coexistence is common for p210 and p190 and I believe the treatment and outcomes are the

by cmljax (Jul 27)

My oncologists orders the p190 PCR every time I have the p210 test done. I think it's overkill to do it every time, but I have to pick my battles and this is not one I care to wage. My

by Anonymous (Jul 26)

Hi people!
On March,15, after fews weeks feeling fever and nocturnal sweating, it was revealed a white blood count of 239 and hb 8,7. I started taken hydrea until March, 29 when the first
Category: Blood tests

Replies: 3

Last updated: 28 July 2018
Poppert on 21 May 2018

Category: Blood tests

Replies: 14

Last updated: 23 July 2018

Test result / stick with Imatinib?
by Poppert (Jul 23)

I had my 6 month appointment with the doctor today. I’m writing here what was said in case anyone finds it interesting in the future.
Amongst other things she said it was good that my blood values

by Poppert (Jul 9)

Blood values are back to normal (more or less) after a week’s Imatinib break. Hb 134, Lpk 3.9, thrombocytes 124 (best ever) and neutrophils 1.5. So back on Imatinib now.
Strange dip last week. Doc

by AlastairC (Jul 4)

Thanks David, that is news to me. It will be interesting to see if Poppert's levels have improved, but we won't know if it is the week off imatinib or an impact of the viral infection.

by David Fitz (Jul 3)

Alastair,
Transient, post-viral neutropenia is pretty common.
Here's a decent paper which discusses some of this. It doesn't go into great detail, but does state that viral load can cause a
Category: Blood tests

Replies: 14

Last updated: 23 July 2018
Dean on 22 July 2018

Category: Blood tests

Replies: 2

Last updated: 23 July 2018

Infection after cut
by kat73 (Jul 23)

Dean - I had a somewhat similar reaction to a serious, infected dog bite. I had some symptoms of infection, but curiously not others, like the pus you mentioned. In the hospital (11 days

by Romo (Jul 23)

It’s pretty clear that you got bit by a “Red Biting Spanish water spider”.
It might be some mysterious never before known bealeszbob.
Our maybe you should give it some time. It might be

by Dean (Jul 22)

I have been taking imatinib 400g since my diagnosis end jan 2018. I just went to spain on holiday. I went swimming and got a very small cut on my knee. I used disinfectant on the cut when it did not
Category: Blood tests

Replies: 2

Last updated: 23 July 2018
MJP on 10 July 2018

Category: Blood tests

Replies: 0

Last updated: 10 July 2018

Please forgive my rant - TSH and doc
by MJP (Jul 10)

I had thyroid cancer in 2000 and had my thyroid removed along with being given 150 mci of radioactive iodine. In April of this year I was diagnosed with CML.
When I first started
Category: Blood tests

Replies: 0

Last updated: 10 July 2018
nk_godvani on 7 July 2018

Category: Blood tests

Replies: 3

Last updated: 9 July 2018

2 years results
by Philiptibbs (Jul 9)

Thats great keep up the good work!

by nk_godvani (Jul 8)

Thank you very much for the reply...

by David Fitz (Jul 7)

They are excellent figures. An optimal result.
The evidence emerging is that if you remain in a similar position, and there’s no reason to think why you wouldn’t, that in some time in the future you

by nk_godvani (Jul 7)

Hello i am on Imatinib (400) since last two years. PCR at 15 month -0.090,

at 18 month-undetactable,

at 21 month-0.022,

at 24 month-undetactable. What about future prognosis. Pls
Category: Blood tests

Replies: 3

Last updated: 9 July 2018
kutsushita on 24 June 2018

Category: Blood tests

Replies: 5

Last updated: 25 June 2018

I cannot achieve MR4.0
by kutsushita (Jun 25)

Thank you for your history, Isla. Now I feel safer that others have pleteaus for long time like me.
Also thank you for the infomation of dose reduction. I think I am on the right truck, and would

by Isla D (Jun 24)

Here is my history in case it's helpful. I started on 100mg Sprycel and went to 50mg after the first six months.
Kat, I LOVE the fact that your BCR ABL level has decreased on 20mg. Very

by kat73 (Jun 24)

Yes, I stayed where you are for about two years and then started getting "<0.01" for a year and now 0.005 and 0.006. The latter two on 20 mg Sprycel.

by David Fitz (Jun 24)

Totally agree with this. 0.014% is a deep response and a very good place to be. There is absolutely no reason to do anything other than keep going on as before. We should not get obsessed with lower
Category: Blood tests

Replies: 5

Last updated: 25 June 2018
tom888 on 14 June 2018

Category: Blood tests

Replies: 8

Last updated: 19 June 2018

TKI and therapy
by tom888 (Jun 19)

After three months of imatinib treatment and a first quantitative count of 0.56% pcr I stopped the drug for 40 days. My last haematological measurements were relatively good! I have no other way to

by Romo (Jun 16)

I dreamed I fell into the dark ocean.
Someone threw me a raft.
I reject the raft because
I might die after I’m saved.

by Tbrand (Jun 16)

Everything we do in life has consequences. CML is a mutation in itself. The sample studies are great low hanging fruit for publication but in my opinion a lot of hyperbole. Too many variables. The

by tom888 (Jun 15)

good afternoon
Category: Blood tests

Replies: 8

Last updated: 19 June 2018
Felix on 16 June 2018

Category: Blood tests

Replies: 3

Last updated: 17 June 2018

6 Month BCR- ABL RESULT
by scuba (Jun 17)

Cool - you are well on your way to a zero after the decimal point.

by Chuckster (Jun 16)

CONGRATS!

Very happy for you!

Chuck.

by David Fitz (Jun 16)

Congrats! That’s a fantastic response. You must be delighted.
David.

by Felix (Jun 16)

Hello all you CML ERS ,I hope you are all feeling well and doing ok.Just had my 6 month BCR-ABL test result and it is 0.79%.My first big fat zero before the decimal point so happy and relieved just
Category: Blood tests

Replies: 3

Last updated: 17 June 2018
Chuckster on 4 June 2018

Category: Blood tests

Replies: 7

Last updated: 13 June 2018

New Bcr/Abl1 (IS) Test Results in from May 30th 2018
by Chuckster (Jun 13)

Thanks for the info!
My Oncologist is on top of it, so based on the X-rays etc, just lowering dosage at this time.
New set of X-rays in 2 weeks.
Chuck.

by kat73 (Jun 13)

That's great news on the reduction. But be advised, diuretics usually don't make a dent in a pleural effusion and corticosteroid treatment can help a little, but a complete drug stoppage has

by Chuckster (Jun 13)

Just got back from my oncologist.
CT with contrast done this morning is showing slight water in left and right lung, but not enough to need to extract with needle or to prescribe a diuretic.

by Chuckster (Jun 9)

Ok latest update from this Wed.- going to give it one more week - changed time of taking med from night to just after breakfast.
I have to get to complete remission in one year ( From Feb 2018 to
Category: Blood tests

Replies: 7

Last updated: 13 June 2018
AlastairC on 9 June 2018

Category: Blood tests

Replies: 4

Last updated: 13 June 2018

ELNet recommendations and NCCN guidelines - MMR in 12 months?
by Romo (Jun 13)

Can you imagine going into the biggest shoe store in the world.
And having a choice of every possible style of shoe or boot or
slipper ever designed to choose from?
The only exception is

by kat73 (Jun 13)

Amen.

by MartinZA (Jun 13)

Hi Alastair
I agree with you 100%. The guidelines were an IMMENSE source of anxiety and worry for me, because I was already very sick when diagnosed and borderline accelerated phase, with a

by David Fitz (Jun 10)

The thing is, these guidelines were made for clinicians not patients. But of course patients read them too, and in these modern times with such access to information it’s impossible not to look
Category: Blood tests

Replies: 4

Last updated: 13 June 2018
robert mcadie on 5 April 2018

Category: Blood tests

Replies: 14

Last updated: 6 June 2018

Consultation
by robert mcadie (Jun 6)

Just got results of 1ST BCR-ABL since going drug free 6 weeks ago. Everything is looking good with the result being 0.002
Robert is feeling really tired and has a fair bit of bone pain but is loving

by robert mcadie (Apr 22)

Will do, hopefully starting tomorrow

by robert mcadie (Apr 22)

Will do, hopefully starting tomorrow

by cmljax (Apr 21)

So Robert is trying cessation and not dose reduction? Whatever the case, please keep us informed. We'll be keeping our fingers crossed
Category: Blood tests

Replies: 14

Last updated: 6 June 2018
Dean on 2 June 2018

Category: Blood tests

Replies: 6

Last updated: 3 June 2018

BCR ABL levels
by Dean (Jun 3)

Thanks David.

by David Fitz (Jun 2)

Abl is expected in a healthy patient, so there’s no “normal” level really. If you have as many BCR-Abl genes as Abl genes you’ll be 100% on your PCR. If there’s 1 BCR-Abl for every 100,000 Abl then

by Dean (Jun 2)

Thanks for the info. My 2 tests were 3 months apart.

by Dean (Jun 2)

Thanks. The two tests were 3 months apart. What would be the normal level of abl - if there is a normal. As the BEC abl went down I expected the abl to go up.
Category: Blood tests

Replies: 6

Last updated: 3 June 2018
Kathyp on 30 May 2018

Category: Blood tests

Replies: 7

Last updated: 1 June 2018

Is glivec classed as chemo
by Kathyp (Jun 1)

Justine no need to apologise, I’ve been taking it 15 years and didn’t know if it was or wasn’t xx

by scuba (Jun 1)

Click link below - another way to think of "chemo" and the drugs we take to treat CML:
http://chemoth.com/types/kinaseinhibitors
The article above is a good summary on how TKI's are a very different

by David Fitz (Jun 1)

It’s a surprisingly murky one, as I understand it. The term “chemotherapy” means different things to a clinician compared to an insurance underwriter. For example, my private medical insurance

by Justine (Jun 1)

I apologize, Kathy, I guess I was wrong. Good to know the correct answer.
Category: Blood tests

Replies: 7

Last updated: 1 June 2018
grahamw on 17 May 2018

Category: Blood tests

Replies: 6

Last updated: 20 May 2018

Diagnosis of accelerated phase
by Lucas (May 20)

chin up, buddy! you should check for some interaction: food or drug (a lot of things can interact with tkis) and have a retest soon (and a mutation analysis), If you were in MMR3, maybe it's just a

by kat73 (May 20)

Graham - Don't give up! Why not switch to Sprycel? I call it the "kitchen sink TKI" because it covers more kinases than any other TKI - it's potent and short-lived, and smaller doses (like 50

by grahamw (May 19)

Hi Lucas,
My previous PCR was 0.1 and the ones before that were below 0.1 as per normal.
My last spike was about 4 years ago and was a singular peak. The consultant is
doing another test, so there

by grahamw (May 19)

Hi David,
Thanks for the swift response. If I'm honest I'd rather take whatever time I could
get with Imatinib, Tasigna looks a different ballgame. Do you know if health
trusts / Consultants
Category: Blood tests

Replies: 6

Last updated: 20 May 2018
Widgeonus on 9 May 2018

Category: Blood tests

Replies: 1

Last updated: 10 May 2018

Anyone ever have multiple tests with unobtainable results (MD Anderson) Trey or Scuba (if you're still on the boards)
by David Fitz (May 10)

Hi - you might find some of the content in section 3 & 4 (page 14+) from our PCR Booklet helpful in understanding why PCR tests can sometimes fail or be inaccurate.
You can find it here - just

by Widgeonus (May 9)

I had blood work on April 10th and the report came back "RNA is inadequate for BCR/ABL1 testing by PCR as judged by sub-optimal amplification of internal control". My doctor reordered the test and I
Category: Blood tests

Replies: 1

Last updated: 10 May 2018
kylelawkc on 21 April 2018

Category: Blood tests

Replies: 3

Last updated: 21 April 2018

Nilotinib—Hypopigmentation
by VioS (Apr 21)

Hii, i have skin lightening on my forhead after 4 years on imatinib, now after 2 months on nilotinib its better, butt i don t think it s going to disapper. i have tried many treatments, with no

by cmljax (Apr 21)

Hi:
I started on Tasigna 600 mg/day in October 2016. I had a number of skin issues, including squamous cell carcinomas, folliculitis, mild petechia. occasional pimples (I am 65 and hadn't had

by cmljax (Apr 21)

Hi:
I started on Tasigna 600 mg/day in October 2016. I had a number of skin issues, including squamous cell carcinomas, folliculitis, mild petechia. occasional pimples (I am 65 and hadn't had

by kylelawkc (Apr 21)

Hi All
I’ve been on Nilotinib 600mg per day since January this year
I’m wondering if there is anyone who’s also taking it experiences skin lightening?
Thank you
Category: Blood tests

Replies: 3

Last updated: 21 April 2018
Justine on 7 April 2018

Category: Blood tests

Replies: 7

Last updated: 12 April 2018

12 month PCR still no MMR
by Justine (Apr 12)

Thank you Cmljax!

by cmljax (Apr 10)

Justine:
Your trend is right and you could very easily reach MMR on your next test. This isn't a race, but reaching MMR and better does feel good. As long as you continue to trend down, you

by Justine (Apr 9)

Thank you, Romo, Alastair, Kat, and David. It is really reassuring. I look forward to some time in the future when I will be able to help people as you help me and so many others. Justine

by David Fitz (Apr 8)

Hi Justine,
You’re right that the guidelines say treatment change should be considered is greater than 0.1% at 12 months.
But you’re trend is downwards, and 0.2% is not really very far from 0.
Category: Blood tests

Replies: 7

Last updated: 12 April 2018