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SeasonJ on 18 June 2024

Category: Blood tests

Replies: 9

Last updated: 8 July 2024

CML - My fluctuating BCR-ABL/ABL level
by Wstevenson (Jul 8)

Videos and resources look fantastic! Thank you for sharing.

by Wstevenson (Jul 8)

Thank you, David. I read all of the discussion, it made me feel a lot better.

:-) Winnie

by David Fitz (Jul 5)

Those videos are up now - see the post in the orange box at the top :)

by David Fitz (Jul 4)

Hi Winnie,
It’s always a worry when numbers go up, isn’t it? But you are still firmly in MMR.
The difference between 0.041% to 0.049% is statistically negligible, they are basically the same result
Category: Blood tests

Replies: 9

Last updated: 8 July 2024
alexmcpee on 3 May 2024

Category: Blood tests

Replies: 5

Last updated: 30 May 2024

Latest BCR results
by Roza (May 30)

Thanks for sharing Alex and it's great news. Stress eats into our immune system and it's not something we deal with well, particularly in Western society. For those of us who are in a slower

by kat73 (May 27)

I couldn't agree with you more, on all your well-made points and observations. I took that long to get to where you are. Over the years I've wondered many times "why?" I feel it was stress (of

by sue. R (May 7)

I am so glad you mention the mental bit. This treatment has gotten me real depress I think, since I take two pills in the morning and I get nauseous and headache all I can do is sleep. Yet I am

by alexmcpee (May 4)

Hi Sue, thank you yes just above the detection line but very very happy with such a large drop.
Plateaus are very common 2.5 years to get to 0.1 for me. It took 1.5 years to go from about where you
Category: Blood tests

Replies: 5

Last updated: 30 May 2024
RN on 14 May 2024

Category: Blood tests

Replies: 5

Last updated: 15 May 2024

Bouncing around MMR
by RN (May 15)

Thank you Kamil and Alex. Appreciate your help. This definitely helps my mental state a lot.

by alexmcpee (May 15)

You’re totally fine. I and many of us (especially the younger folk) seem to bounce around that area. I did for 2.5 years before reaching 0.07 MMR.
It only affects your mental state and nothing more

by Kamil (May 15)

Hello,

We are at a similar position, diagnosed 2 years ago. Lowest reading was 3 months ago at 21st month mark at 0.011, and the latest result bounce back to 0.069.
Similarly to you, we

by RN (May 14)

Thank you Buzz!! Feel much better now.
Category: Blood tests

Replies: 5

Last updated: 15 May 2024
k.Tam on 23 April 2024

Category: Blood tests

Replies: 23

Last updated: 11 May 2024

About Treatment Free
by scuba (May 11)

The solution to cancer lies in genetics of our immune system. Cancer occurrence is an immune system failure.

We like to think of ourselves as 'machines' with parts breaking and in need of

by JoeP (May 11)

Allistair’s video is awesome. I especially like the visual presented that MR4 is similar to less than a grain of sand.
I do want to amend my response to what Scuba said about the immune system

by vlacer (May 9)

Alastair,

Thanks, great video!!

by JoeP (May 9)

My previous onco once referred to CML as a stupid cancer. His logic being that CML only has one genetic aberration. The acute forms are much more complicated and can involve lots of different
Category: Blood tests

Replies: 23

Last updated: 11 May 2024
Gian P on 1 May 2024

Category: Blood tests

Replies: 3

Last updated: 2 May 2024

CBR Up and Down! Very Frustrating...
by Gian P (May 2)

Thank you Pat,

i finally spoke to my Doctor and she also told me that in the scheme of things my test is not bad, could be better but at this point we have to continue monitoring the results,

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets
Category: Blood tests

Replies: 3

Last updated: 2 May 2024
vlacer on 27 March 2024

Category: Blood tests

Replies: 6

Last updated: 3 April 2024

Finally!! “not detected” result
by vlacer (Apr 3)

Thanks Pojo,

I agree, it will be better not to take the risk for now because I already have heartburn issues so fasting with Imatinib will make it even worse.

Vlacer

by JoeP (Apr 2)

That Fasting Mimicking diet looks like a hard one to do. For me it’s easier to remain in a fast while not eating. The second I eat it’s over. The ship is underway and stopping it, at least for me,

by vlacer (Apr 2)

Thanks Pojo and Scuba for your advises, very interesting article about fasting mimicking diet.

Vlacer

by scuba (Apr 2)

Congratulations!
Fasting while taking imatinib won't be possible. Imatinib will cause bad nausea on an empty stomach.

What you could do is try a "fasting mimicking diet" https://perfectketo.
Category: Blood tests

Replies: 6

Last updated: 3 April 2024
Fillette on 6 March 2024

Category: Blood tests

Replies: 7

Last updated: 13 March 2024

Should I Increase Dasatinib dose from 50mg to 100 mg?
by AlastairC (Mar 13)

This change from .007 to 0.015 is not statistically significant - it is well within the error band of the measurement technique at this low level. I would suggest that if it rises again at both of

by jriccoboni (Mar 12)

I am in similar situation. I finally reached a 4 log reduction after switching from 100mg to 80mg sprycel ( .007 IS) . 8 weeks later I took a test yesterday and my results are no .015 IS. I am

by scuba (Mar 11)

Yes. The fluctuations are within the accuracy and precision of the PCR test. 1/2 log up or down can be expected from the same blood sample.

At MMR4, residual presence of bcr-abl is very very

by Tbrand (Mar 10)

So any fluctuations below MMR 4 is all noise?
Category: Blood tests

Replies: 7

Last updated: 13 March 2024
healthyhabits on 4 February 2024

Category: Blood tests

Replies: 12

Last updated: 12 March 2024

Afraid
by ColoradoGuy (Mar 12)

That is great news! I would however add that I don't think a transplant conversation should have even been in the discussion yet based on the numbers you mentioned. There could be other

by JoeP (Mar 3)

Great news! That’s a high few people in this world experience seeing their numbers drop like a rock. Maybe you have, but in case you haven’t, you may want to look into whether there is a patient

by healthyhabits (Mar 3)

I just have to say everyone on this forum has been so incredibly helpful. I have been very strict with myself in the last month or so, taking the drug exactly as prescribed (as you suggested), and

by JoeP (Feb 5)

I must admit when the Nilotinib wasn’t working as well as we hoped, this was July 2022, I was concerned along with my doc. I knew we wouldn’t be approved for the ascinimib and I just told my doc to
Category: Blood tests

Replies: 12

Last updated: 12 March 2024
SarahCMLjourney on 19 February 2024

Category: Blood tests

Replies: 6

Last updated: 29 February 2024

New to CML any advice welcomed
by MartinZA (Feb 29)

Hi Sarah,
Sorry to hear that you had to join our little community at such a young age!
I just wanted to share some hope with you as I was also on the younger side when diagnosed, although a bit

by SarahCMLjourney (Feb 20)

Thanks for all of your responses!
I will definitely go through the forum to find those questions etc
Appreciate the kind words

by David Fitz (Feb 20)

Hi Sarah,
For what its worth, I was young at the time of diagnosis (early thirties) and it took me a lot longer than usual to respond. But I did respond!
I think I was around 20% at 3 months.
David

by AlastairC (Feb 20)

Sarah very sorry that you have joined this club at such an young age, but it likely means that you will be a member for many decades!
As Buzz says your initial trend is down, so the imatinib is
Category: Blood tests

Replies: 6

Last updated: 29 February 2024
Justine on 30 June 2018

Category: Blood tests

Replies: 14

Last updated: 12 January 2024

15 mo results still no MMR
by Maddie (Jan 12)

I remain now on 20. With Bcrabl. .002. 4.3.

by Maddie (Jan 6)

Thank you. Just wanted to let all know you can start at a lower dose. You can always go up and lower has less side effects

by Buzzm1 (Dec 30)

Maddie, thought I would bring your post from May 12, 2021 forward:
May. Undetectable
March. .0187. 3.72
feb. .029. 3.55
had surgery and stop drugs for week
Nov. .055. 4.26
sept. .0126

by Maddie (Dec 24)

My dr at Dana started me at 50 mg. Gleevic made Mr really sick

After 2 years down to 40. And now 20 mg. .002 and 4.7. Bcrabl tests

Hoping to get to every other day
Category: Blood tests

Replies: 14

Last updated: 12 January 2024
Lucky Utubor on 24 November 2023

Category: Blood tests

Replies: 1

Last updated: 5 December 2023

High platelet and benign tumor growth
by hannibellemo (Dec 5)

Hi, Lucky, I really don't know what to say about your platelet situation, sorry.
I'm going to throw this out there as a possibility for the benign tumors though. Because you are on dasatinib and

by Lucky Utubor (Nov 24)

Hi,
I have been experiencing high platelets for over a year now for this reasons my medications was changed from imatinib to dasatinib and I was placed on a 1000mg of hydroxyurea but so far the
Category: Blood tests

Replies: 1

Last updated: 5 December 2023
Alex1981 on 23 August 2023

Category: Blood tests

Replies: 6

Last updated: 25 August 2023

Results have gone up 3 times in a row
by Alex1981 (Aug 25)

That’s Great!! Ok , let me see if I can catch you up 😁 sounds like you are doing very well and that fills me with hope

by RC Kirk (Aug 25)

My results have been trending down over the last couple of years. I'm back on original Gleevec and currently 200mg per day.
2022 0.1290%, 0.0671%, 0.0264%, 0.0268%
2023 0.010% (new lab - Quest

by Alex1981 (Aug 24)

Hello . :) 2012 was the year. . I remember the olympics being on when I just found out. Wondering what would be , my son was 2 years old , very worrying time . What are your results like now ? The

by Alex1981 (Aug 24)

Thanks for the reply . It’s kind of reassuring . I don’t take any supplements , I just try and live clean , I use to smoke cigarettes and marijuana , I was never a big drinker . I now do none of
Category: Blood tests

Replies: 6

Last updated: 25 August 2023
loafer on 10 July 2023

Category: Blood tests

Replies: 2

Last updated: 19 July 2023

Any ideas
by alexmcpee (Jul 19)

Blimey I echo everything ColoradoGuy says. It’s important to move on from CML when the goings good but it’s also a reminder it’s never a given this is proof that resistance can emerge which is why

by ColoradoGuy (Jul 10)

I think the first step would be to look for mutations. I would also consider a switch to Nilotinib as Sprycel appears not to be working as intended. I made a switch from Sprycel to Nilotinib and

by loafer (Jul 10)

It has been a while,any ideas from 10/2022 and on .
20 Mg Sprycel

08/2018 thru 02/2019

PCR 0.000
New Doctor

20 Mg Sprycel

06/07/2022 PCR 0.298

10/24/2022 PCR 78.
Category: Blood tests

Replies: 2

Last updated: 19 July 2023
healthyhabits on 12 July 2023

Category: Blood tests

Replies: 1

Last updated: 12 July 2023

PCR Result - 2 Months
by Buzzm1 (Jul 12)

Olivia, an optimal response is BCR-ABL1 ≤10%, ≤1% and ≤0.1% at 3, 6 and 12 months of TKI therapy.
Buzz

by healthyhabits (Jul 12)

Hi everyone,
I received my first PCR result since diagnosis in April. I don’t have the PCR at diagnosis, but the bone marrow aspirate came back at 83% BCR-ABL1.
Started dasatinib in May. Two months
Category: Blood tests

Replies: 1

Last updated: 12 July 2023
Mike B on 23 June 2023

Category: Blood tests

Replies: 7

Last updated: 27 June 2023

Detected after not being detectable
by healthyhabits (Jun 27)

Thank you Mike, thank you scuba! 100mg is way too much for me. I much prefer these side effects to the ones I experienced on bosutinib (crazy nausea) but would much prefer to be on a lower dose than

by scuba (Jun 26)

Olivia,
You were just diagnosed so you need to be very vigilant. If you show signs of myelosuppression, rashes (mouth sores), dose reduction to 70 mg or even better to 50 mg. is warranted. In some

by Mike B (Jun 26)

My specialist now starts all new CML chronic phase patients at 50mg dose if they begin with Dasatinib. She feels there is now enough evidence and studies to show 50mg is a reasonable place to start

by healthyhabits (Jun 26)

Sorry Mike for this surprising result - sounds like Scuba and your doc (among others) know what they are talking about and you are in the best hands!
@Scuba, @others who have experience with this!
Category: Blood tests

Replies: 7

Last updated: 27 June 2023
Kamil on 13 June 2023

Category: Blood tests

Replies: 0

Last updated: 13 June 2023

Elevated WBC , PCR still dropping
by Kamil (Jun 13)

Hi All,

I hope everyone is well,

We just received our 12 month bcr-abl results alongside with the rest of the blood results.
The BCR-ABL (is) is trending downwards from 80% at diagnosis
Category: Blood tests

Replies: 0

Last updated: 13 June 2023
Ronniejohn46 on 31 May 2023

Category: Blood tests

Replies: 6

Last updated: 2 June 2023

What does a FISH BCR-ABL1 t(9,22) percentage tell me?
by scuba (Jun 2)

It is not possible for you to have a FISH percentage (>50%) and be undetected for bcr-abl at the same time unless FISH was used for a different blood disorder (not CML). There could be an error

by David Fitz (Jun 1)

Is this possibly some sort of atypical CML?
Generally FISH from bone marrow results correlate well to PCR (molecular) results from blood. Clearly they are not correlating in your case.
At the heart

by Ronniejohn46 (Jun 1)

I'm not sure either. It could be that I showed concerned about the high FISH and the sustained log>5 reduction.

by Ronniejohn46 (Jun 1)

No, not that I have been briefed. I'm definitely not comfortable with how my case is being handled. I have contacted M.D. Anderson about obtaining a second opinion and, perhaps, additional testing
Category: Blood tests

Replies: 6

Last updated: 2 June 2023
healthyhabits on 25 April 2023

Category: Blood tests

Replies: 6

Last updated: 1 May 2023

New diagnosis - curious about your stats prior to treatment
by David Fitz (May 1)

PCR fluctuates wildly at higher %s, and FISH is more stable at that point. But PCR comes into its own at the lower levels. There are many approaches to CML testing; in a perfect world where pain was

by Nimbus2 (May 1)

Thank you, David, for this helpful posting. I was guided to consider the PCR at diagnosis to be 100%. I was also told that FISH trumps PCR until FISH reaches zero.
I did not get a PCR until three

by David Fitz (Apr 28)

The numbers at the start (mainly excluding blast %) are often not really so important, but how they respond to treatment is the key thing.
You can have a sky high BCR-Abl at diagnosis, over 300% but

by MartinZA (Apr 28)

Hi healthyhabits
So sorry to hear that you've just been diagnosed and that you've had to join our club. I am sure that all of this must be very frightening and overwhelming right now, if you're
Category: Blood tests

Replies: 6

Last updated: 1 May 2023
rambler on 11 August 2022

Category: Blood tests

Replies: 10

Last updated: 6 February 2023

Low platelets, low WBC. First post
by rambler (Feb 6)

Hello Sandy,
Thanks for your message.
As you probably remember, I had a hospital appointment with the doctor today. Had a blood test first. Then to the doctor.
We were told from the blood test that

by sandy craine (Feb 4)

Hi Paul, You should definitely ask detailed questions of your doctor. I have been treated at Imperial College Hammersmith since my diagnosis in 1999. I eventually showed resistance to imatinib in

by rambler (Jan 30)

Hello Sandy,
Many thanks for writing
I didn’t know I had too much to worry about until you mentioned ASXL1 could be complicating matters. Hmmm. Now I have googled the gene it doesn’t

by sandy craine (Jan 30)

Hi Paul,
Re: ASXL1 gene.
From what I have read and understand (very little) ASXL1 is a tumour suppressor gene. It certainly complicates the picture. As you live in London, I assume/hope you are
Category: Blood tests

Replies: 10

Last updated: 6 February 2023
Dustylloyd on 21 March 2019

Category: Blood tests

Replies: 26

Last updated: 21 December 2022

Alcohol and Cml
by Fernando Burbano (Dec 21)

Hola Phillip

Leí que eras físico culturista.

Quería preguntarte si todavía haces ejercicio o lo dejaste por la LMC?. Yo procuro seguír ejercitando en el Gym , pero ya no como antes , me

by Rocky Mountain Gal (Aug 3)

I was taking milk thistle prior to my diagnosis, but was told to stop. That was in the early days, when they had me on multiple drugs.
Is there a resource for checking supplements against

by onekayaker (Aug 3)

Long time to get results!!! The waiting is the worse.

by scuba (Aug 3)

In fact, ANY amount of alcohol is bad for you. I was reading this over a glass of scotch:

https://www.theguardian.com/society/2021/may/18/any-amount-of-alcohol-co...

Other research I came
Category: Blood tests

Replies: 26

Last updated: 21 December 2022