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Deni H on 14 January 2022

Category: Blood tests

Replies: 10

Last updated: 17 March 2022

BCR ABL Increase
by Norma_55 (Mar 17)

Hi there don’t worry too much about the bone marrow biopsy it’s not as bad as you think it might be, I had one in 2020 from the hipbone.
and as far as side affects from treatments go not

by Deni H (Feb 23)

Thanks Sandy.
I think they are starting me on Dasatinib when I go back in 2 weeks. I had another Bone Marrow Biopsy yesterday to get a good base line.
Any ideas what possibly to expect with side

by sandy craine (Feb 22)

Hi Deni,
Sorry to hear you have developed a mutation but don't worry too much. I assume your clinician has already identified the particular mutation and will let you know what it is?
There are

by Deni H (Feb 21)

Hi All
I hope you're all well.
Just an update from my post in January. I saw my consultant today who has confirmed a mutation in my recent BCR ABL and increase to 1.9 from 1.16 in November.
So
Category: Blood tests

Replies: 10

Last updated: 17 March 2022
Buzzm1 on 12 February 2022

Category: Uncategorised

Replies: 1

Last updated: 17 March 2022

Probable TFR fail and restarting TKI
by Buzzm1 (Mar 17)

October, 2021 undetectable
November, 2021 0.01
December, 2021 0.03
January, 2022 0.05
February 2022 0.09
Debdoodah will test again at the end of March.

by Buzzm1 (Feb 12)

Debdoodah, on the U.S. LLS CML discussion forum, has been in TFR since September, 2021; she should be receiving the result of her latest BCR-ABL test in the next day, or two.
October
Category: Uncategorised

Replies: 1

Last updated: 17 March 2022
steven7 on 13 March 2022

Category: Blood tests

Replies: 4

Last updated: 16 March 2022

Change lab and BCR result increase
by johnw1001 (Mar 16)

Hi
Most specialists would not be that concerned with your figures because if your PCR score is less than 0.1 then you are in safe territory and very much in MMR.Even if you were above 0.1 and

by sandy craine (Mar 14)

Hi Steven, I hope so... but the project to ensure the standardisation of labs using PCR for CML (known as international standard - IS) has been a challenge over the years.
Best to you,
Sandy

by steven7 (Mar 14)

Thanks sandy.
I am in Canada so hope that's less problematic.
Anyone who got same experience please share.

by sandy craine (Mar 14)

Hi Steven,
The problem with changing labs is that they may be using a different 'housekeeping gene' that that used by the first lab... plus there may be other issues to do with expertise and
Category: Blood tests

Replies: 4

Last updated: 16 March 2022
jb on 11 March 2022

Category: Blood tests

Replies: 1

Last updated: 14 March 2022

Please advise
by sandy craine (Mar 14)

Hi JB, concerning your ANC. I am not sure your should be too worried about with this result - 1.6. According to the reference ranges- see link here as long as ANC is above 1.5 there should

by jb (Mar 11)

I recently received the results of my latest PCR BCR/ABL and there was a slight increase in my numbers. Also, my WBC and Absolute Neutrophils have dramatically dropped to below the low norms.
Category: Blood tests

Replies: 1

Last updated: 14 March 2022
Justine on 25 January 2022

Category: Treating CML

Replies: 24

Last updated: 14 March 2022

For US patients
by hannibellemo (Mar 14)

I like Trey's idea of rotating drugs so the side effects never have a chance to take hold for those of us who tend to develop all the "fun" side effects even though the drugs work very

by ColoradoGuy (Mar 12)

India jumps on that pretty quick but even three year wait to pay $50 a month is a welcome change.

by Buzzm1 (Mar 11)

ColoradoGuy, although I saw the same information, that you are referring to, posted on the web, I am highly skeptical of the July 4, 2023 U.S. patent expiry for Tasigna. I have a call into

by ColoradoGuy (Mar 11)

I believe Nilotinib comes off US patent July 4th 2023.
Category: Treating CML

Replies: 24

Last updated: 14 March 2022
mil on 11 March 2022

Category: Uncategorised

Replies: 4

Last updated: 12 March 2022

Imatinib, 2 years control
by mil (Mar 12)

Thank you ColoradoGuy. You just give me peace and calm, i really appreciate it.
Mil

by ColoradoGuy (Mar 12)

That is not much of a difference. Results do not continually go down forever in the vast majority of cases. There is slight ups and downs with an overall trend down. If it continues upward and in

by mil (Mar 12)

Thank you ColoradoGuy for your answer.
I was worried because in my last test there is an increase in my result, the previous one was lower than the last one.

by ColoradoGuy (Mar 11)

This is a great result. Many people go years before seeing an undetectable result and some people never see undetectable. Your results are nothing to worry about. Congrats!
Category: Uncategorised

Replies: 4

Last updated: 12 March 2022
David Fitz on 12 March 2022

Category: Uncategorised

Replies: 0

Last updated: 10 April 2022

“My CML” phone app now available
by David Fitz (Mar 12)

Following from what started as a masters students questionnaire about managing CML, to the thought that a phone app could help, with further research into what patients needed, and help from this
Category: Uncategorised

Replies: 0

Last updated: 10 April 2022
Bill Miller on 3 March 2019

Category: Side effects

Replies: 3

Last updated: 8 March 2022

Electrolytes
by thomas.c (Mar 8)

I was just searching in the forum archives for mentions of Potassium, because the exact same thing happened to me what you are describing. For the past 3-4 years I have been dealing with pretty bad

by Bill Miller (Mar 5)

Thanks David. Yes, over the past 6 months I've had probably 20 EKGs. Last fall when the CML diagnosis happened, it began with tachycardia, then a- fib and a flutter. I had an SVT ablation this

by David Fitz (Mar 5)

Hi Bill,
I am absolutely no expert in this area - but I had a bit of a look around and have one line of thinking that may be worth discussing with your doctor.
Some CML drugs can cause issues with

by Bill Miller (Mar 3)

I’m curious if there’s any known connection between CML and/or TKIs with electrolytes. I’ve had fairly pronounced heart rhythm issues for over three years, which I’m sure
Category: Side effects

Replies: 3

Last updated: 8 March 2022
HelenS on 28 February 2022

Category: Uncategorised

Replies: 1

Last updated: 28 February 2022

Antibody treatment
by HelenS (Feb 28)

Correction... antibody treatment not antiviral.

by HelenS (Feb 28)

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Category: Uncategorised

Replies: 1

Last updated: 28 February 2022
Sd on 5 April 2021

Category: Side effects

Replies: 6

Last updated: 7 March 2023

Abdominal issues and sleep
by Sd (Feb 27)

You are newly diagnosed. That first year of meds for me (Sept 2019-2020) was very unpleasant. I take imatinib. I had a full body rash for 6 weeks. Daily nausea. Lost my eyebrows and other body

by ChrisB4450 (Feb 26)

SD: I'm recently diagnosed with CML (October 2021) and have been taking 100mg of Sprycel daily. I have been having the same symptoms and came upon your comment when searching for answers. Were

by Sd (Apr 11)

Thank you for the information. I will check on this. I do take a Complex B daily. That does help, I think. The fatigue is an ongoing problem. Some good days, some not so. Maybe the pandemic is

by alexmcpee (Apr 11)

Berroca is just a multivitamin mainly B vits which help with energy. I was suffering from quite a bit of fatigue and I tried everything to curb it and I think they do help a little. Not sure if my
Category: Side effects

Replies: 6

Last updated: 7 March 2023
brandonromeril99 on 10 February 2022

Category: Uncategorised

Replies: 7

Last updated: 25 February 2022

Need answers please. Neutropenia on imatinib
by brandonromeril99 (Feb 25)

Hi, sorry for late response
pcr results are as shown:
16/8/21 - BCR-ABL/ABL Ratio: 0.049%
9/9/21 BCR-ABL/ABL Ratio: 0.088%
7/10/21 BCR-ABL/ABL Ratio: 0.067%
4/11/21 BCR-ABL/ABL

by sandy craine (Feb 15)

OK, I understand that starting you again on imatinib is 'precautionary' but given dasatinib has shown it's activity in acute leukaemia I am surprised that your clinical team has not used

by brandonromeril99 (Feb 14)

Hi, so back i 2017 when I had high dose chemo it killed all of the leukemia and had remission the same year, but finished intensive chemo February 2018. Was on maintenance (including imatinib)

by sandy craine (Feb 13)

I understand your anxiety given your diagnosis of Ph+ ALL rather than Ph+CML. ALL is not a simple disease to control, but hopefully the high dose chemo drugs did knock out the leukaemia lymphoid
Category: Uncategorised

Replies: 7

Last updated: 25 February 2022
ishbc6 on 22 February 2022

Category: Treating CML

Replies: 2

Last updated: 23 February 2022

**Tasgina causing bone marrow problems
by ishbc6 (Feb 23)

Since I have been on Tasigna (Nilotinib) I have had lowering platelet counts. Currently just below 50. Doctor is now wanting to take another look at bone marrow, tomorrow.

i

by sandy craine (Feb 23)

Hi Bryan,
I am not sure about the 'more sensitive bone marrow' but some patients are more or less sensitive to TKIs. TKis in general can cause low blood cell counts and if this happens it is

by ishbc6 (Feb 22)

Hello All,
Has anyone heard or had any experience with TKI's (specfially Tasigna) lowering your WBC and Platelets drastically? I know it said its a side effect of the meds.

My doctors
Category: Treating CML

Replies: 2

Last updated: 23 February 2022
cousineg2 on 22 February 2022

Category: About CML

Replies: -1

Last updated: 22 February 2022

Doctor Shares CML Treatment Updates from ASH 2021

Category: About CML

Replies: -1

Last updated: 22 February 2022
ishbc6 on 19 February 2022

Category: Blood tests

Replies: 3

Last updated: 21 February 2022

HELP!! DR Wants bone marrow biopsy: Currently on Tasigna
by ColoradoGuy (Feb 21)

They probably want to run a karyotyping test to see if there are any other additional chromosomal abnormalities rather than looking for percentage blast cells. That of course is just a guess,

by ishbc6 (Feb 19)

I was diagnosed in October 2020. Had one bone marrow biopsy, now they want to do another one. I had a mutation test when I switched from Imatinib. Came back normal I am assuming, because I didn

by johnw1001 (Feb 19)

Hi,
There have been some postings here on Forum in the past re the use of the bone marrow biopsy as opposed to relying on the much less invasive use of peripheral blood i.e.the pcr of bcr/abl.The

by ishbc6 (Feb 19)

Hello All,
I am currently taking Tasigna 150 MG 3 times a day for a few months now. BCR is slowly coming down, however my Platelets have dropped for the last 3 months, as well as my WBC, ANC. I was
Category: Blood tests

Replies: 3

Last updated: 21 February 2022
Lesley Margetts on 9 February 2022

Category: About CML

Replies: 5

Last updated: 18 February 2022

CML Dasatinib medication
by scuba (Feb 18)

I am not sure I understand your question.

by k.Tam (Feb 18)

May I know if in 20mg can be said relatively higher probability to be treatment free ?

by scuba (Feb 13)

Lesley,
You are an excellent candidate for "treatment free remission" (TFR) test. You have two choices.
1. First reduce your dose from 100 mg to 20 mg dasatinib for six months. This will

by Lesley Margetts (Feb 13)

Thank you for your response Sandy
I have yet to have a face-face conversation with my consultant, my understanding I have been in remission since 09/2018 no cells detected.
BCR-ABL undetectable MR5
Category: About CML

Replies: 5

Last updated: 18 February 2022
Taper11 on 16 February 2022

Category: Children & young people

Replies: 4

Last updated: 17 February 2022

3 month PCR Log Reduction
by Taper11 (Feb 17)

Thanks for the explanation regarding the different treatment options.
Nice work on figuring that from the top of your head. I had to get out my calculator 😁.
I get the feeling from my hematologist

by David Fitz (Feb 17)

Hi,
Generally the 3 month goal is 10%, which is a 1-log drop from 100%. Even if we are not 100% at diagnosis (could be higher, could be lower) we “pretend” we are so results are

by Taper11 (Feb 17)

I've seen plenty of posts with the rollercoaster ride like you've had. I understand it's common and shouldn't be dwelled upon.
I'm still pretty early down the road, having only 1 PCR test. But at

by israel (Feb 16)

Hi Taper11, I think there are milestones that people can use as reference when making treatment decisions, however these milestones are generalized and might not reflect exactly your case. If you
Category: Children & young people

Replies: 4

Last updated: 17 February 2022
sandy craine on 5 February 2022

Category: Other conditions

Replies: 3

Last updated: 16 February 2022

Epsom Salt Baths & Topical Magnesium
by scuba (Feb 16)

John,
Topical magnesium won't have the impact as magnesium absorbed in the gut direct into your bloodstream. I eliminated my muscle cramping (mostly legs at night) within 12 hours once I started

by sandy craine (Feb 15)

Hi John,
Yes I agree magnesium supplementation can take a long time to have an effect (especially if your'e being treated with TKIs). I would not worry too much about the dose- I take

by johnw1001 (Feb 13)

Hi Sandy
Many tkis seem to have side effects of night cramps as well as other unpleasant musculo skeletal effects such as myositis and inflammation of the muscles and so on.I have tried spray on

by sandy craine (Feb 5)

Several studies have shown that magnesium is able to cross through the skin and into the body’s tissues and circulation
Topical magnesium solutions and Epsom salt baths may be a way to boost
Category: Other conditions

Replies: 3

Last updated: 16 February 2022
Danmason11 on 15 February 2022

Category: Blood tests

Replies: 3

Last updated: 15 February 2022

First BCR-ABL results sub optimal
by sandy craine (Feb 15)

Hi Dan,
Yes I understand. Queen Elizabeth hospital is a centre of excellence for CML etc. so maybe you could ask for either 'shared care' or preferably a referral? 4-5 weeks seems an overly

by Danmason11 (Feb 15)

Thank you so much for the reply Sandy, I really appreciate it.

I am being treated in Wolverhampton, and must admit to feeling a bit let down in terms of care and support aside from

by sandy craine (Feb 15)

Hi Dan,
It's really difficult not to be anxious when first diagnosed. Your doctor's use of the term 'sub-optimal' will not have done anything to reassure you, but their qualification

by Danmason11 (Feb 15)

Hi all
i was diagnosed in August 2021 and started in 400mg Imatinib. Had my first blood test in November, but never got told the BCR-ABL results until today. I had my second blood test last week, so
Category: Blood tests

Replies: 3

Last updated: 15 February 2022
Michaelwst on 9 February 2022

Category: Treating CML

Replies: 2

Last updated: 11 February 2022

Started my trial with PGE1 on CML Stem Cell
by Michaelwst (Feb 11)

Will do. End of March will have my next check. Will know by then what this one and half months bring.

by scuba (Feb 9)

Very interesting! Keep us posted.

by Michaelwst (Feb 9)

After taking TKI for over two years, last two tests were below 0.01% but still not undetected yet. Have read the article about PGE1 and Misoprostol for eradicating CML stem cell. I couldn't
Category: Treating CML

Replies: 2

Last updated: 11 February 2022
sarahrose on 6 February 2021

Category: Uncategorised

Replies: 3

Last updated: 9 February 2022

GVHD
by Betty8 (Feb 9)

Hi Sarah. Just read your posts and would love to know how you are getting on after the transplant?
:)

by An (Feb 7)

Hi,
I remember reading your husband's posts,It is nice to hear you are dng well after your transplant.Hope you guys have a nice and calm life after all these turbulent times.

by alexmcpee (Feb 6)

Hi Sarah!
Yes I recall your husbands posts and had wondered how your transplant had gone and I wished Jason well and to let us know how you got on. That’s absolutely fantastic that you 0

by sarahrose (Feb 6)

Hello all, long time since I have posted! My name is Sarah... my husband Jason and I posted alot at the beginning of my diagnosis in 2018 and in 2019. I eventually failed several TKI's and then
Category: Uncategorised

Replies: 3

Last updated: 9 February 2022