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brandonromeril99 on 26 March 2022

Category: Uncategorised

Replies: 4

Last updated: 26 March 2022

Breathing issues
by brandonromeril99 (Mar 26)

My latest renal canal blood test shows that all my levels are within good range, but this is definitely something I’ll try thank you, And to answer your question about water, I drink a

by sandy craine (Mar 26)

How is your diet? are you eating and/or drinking enough water throughout the day. You may have an electrolyte imbalance which could be the cause of your symptoms.... sodium/magnesium/potassium

by brandonromeril99 (Mar 26)

Hi, yes both times negative on the covid test.

by sandy craine (Mar 26)

I assume you have a negative test for Covid - omicron Ba.2? which is spreading fast and is likely to be the dominant strain going forward.
Sandy
Category: Uncategorised

Replies: 4

Last updated: 26 March 2022
JohnFromChicago on 22 March 2022

Category: Uncategorised

Replies: 4

Last updated: 24 March 2022

Big Variance In PCR Results In Short Timespan
by kat73 (Mar 24)

John, I share your frustration, but I'm afraid we both (and others) need to calm down. What you describe is what happens to me all the time now (in the past 4-5 years) at the same institution,

by JohnFromChicago (Mar 23)

Hi Thomas thanks for your response I guess what I find the most confusing are the two undetectable results I received in the last 12 months alongside the new also higher results like the .08s. The

by thomas.c (Mar 23)

Another thing worth mentioning: i did notice some changes in the pcr testing ever since covid. Test results out way slower, not sure how that affects the sample quality, and also the number of blood

by thomas.c (Mar 23)

Going from .02 to .08 is ”just” 4x change, thats not even 1 log. I often got choppy results like that.
What i noticed is that 50mg is simply not enough for everyone. I have read
Category: Uncategorised

Replies: 4

Last updated: 24 March 2022
Justine on 11 March 2022

Category: Children & young people

Replies: 9

Last updated: 24 March 2022

Undetectable at 5 years
by annie63 (Mar 24)

Wonderful to hear your news Xx

by Justine (Mar 22)

Thanks Mil:

by Justine (Mar 22)

Thank you Sandy, and thanks for this website which has been so helpful to me over the years.

by Justine (Mar 22)

Thanks RaeB. Hang in there. I hope you are feeling good anyway, and hope you have a good relationship with your medical provider.
Category: Children & young people

Replies: 9

Last updated: 24 March 2022
SageH on 20 March 2022

Category: Treating CML

Replies: 2

Last updated: 23 March 2022

Dose Reduction on Sprycel
by thomas.c (Mar 23)

I feel your pain, but i’m afraid a dr will not recommend to do any change if the system works, and even though your feelings are valid, until there is something measurably wrong they will

by scuba (Mar 20)

Hi Sage,
I was treated on 20 mg dasatnib while still positive for CML, by Dr. Cortes (world expert in CML) and achieved non-detection status. I have since stopped all therapy one year ago and

by SageH (Mar 20)

I was diagnosed in June 2021 and started on 100 mg of Sprycel. Fortunately I had a very robust response, but suffered from fatigue, upset stomach, rashes, and headaches. Ultimately, I was able
Category: Treating CML

Replies: 2

Last updated: 23 March 2022
Deni H on 21 March 2022

Category: Side effects

Replies: 6

Last updated: 23 March 2022

Dasatinib and exercise
by sandy craine (Mar 23)

Pat.... yes x means a kiss.
Sandy x

by kat73 (Mar 22)

Deni - I second all that has been said about the 100 mg. You need to get that down as soon as you can - if you reach (have reached) MR3, you should definitely reduce. I don't know

by hannibellemo (Mar 22)

Hi, Deni,
I started on 100mg dasatinib in 2009 after imatinib and my liver refused to play well together. From Thanksgiving Day to March of the next year I experienced such fatigue that I often just

by Felix (Mar 21)

Hi, hopefully your BCR ABL will reduce quite quickly,if it does please don't struggle on 100 mg for very long ,you don't want to have pleural effusions which can happen on this dose .50 mg
Category: Side effects

Replies: 6

Last updated: 23 March 2022
Stewart Bliss on 15 March 2022

Category: Getting help

Replies: 7

Last updated: 21 March 2022

Does Taking Tasigna create some benefit against contracting severe Covid-19?
by sandy craine (Mar 21)

Hi Stewart,
Yes, I did form a support group back in late 1999 when I first came back from the US having taken part in the Phase ll trial of STI571 now known as imatinib/Glivec/Gleevec. Another

by Stewart Bliss (Mar 20)

Hello Sandy,
As I have just mentioned in a couple of replies to people who replied to my post..
Thanks for letting my original 'story' remain, because i should not have gone into
the

by Stewart Bliss (Mar 20)

Hi Norma,
My wife Maxine, is much more academic and clever than me, but I guess I am more extroverted and in her eyes
probably too talkative.

She has undertaken considerable research into m-

by Stewart Bliss (Mar 20)

Hello John,
If you don't mind my saying ' you write a very in depth and interesting post.
I don't know your occupation, but you seem very well 'versed' in in
Category: Getting help

Replies: 7

Last updated: 21 March 2022
VinayJagnani on 17 March 2022

Category: Blood tests

Replies: 5

Last updated: 19 March 2022

BCR-ABL %
by JohnFromChicago (Mar 19)

Age 34 here I was diagnosed at 28 my PCR result bounces between .02 and .08. Seems as of recent people have been seeing more fluctuations in their PCR results as well. I believe this maybe due to

by ColoradoGuy (Mar 19)

I would not say that it is common but it is nothing to worry about. Being under 1% good news, and .026 even better. I don't know your age but I have noticed on this and other forums that younger

by VinayJagnani (Mar 18)

Hello Friends,
Thanks everyone for the response. Its so reassuring to hear so positive response and happy to hear that this is common.
I feel so much better now.
Thank You.

by ColoradoGuy (Mar 17)

There is no reason to increase dose at these levels. You can remain here for months before you see another drop. Or it can increase slightly before coming down again. It is like small ripples
Category: Blood tests

Replies: 5

Last updated: 19 March 2022
sandy craine on 19 March 2022

Category: Uncategorised

Replies: 0

Last updated: 19 March 2022

COVID- BA 2 Omicron surge
by sandy craine (Mar 19)

Dr John Campbell update 18th March 2022: Omicron BA.2 cases surge, UK has pandemic record high infections.
https://youtu.be/c4DH4ws03PY
Category: Uncategorised

Replies: 0

Last updated: 19 March 2022
Norma_55 on 17 March 2022

Category: Uncategorised

Replies: 3

Last updated: 19 March 2022

Resistant cells to treatment?
by Norma_55 (Mar 19)

Ps it’s only just been discovered this week about the 5% that was on my second blood test. I’ve only been on Travsiga for a few months.

by Norma_55 (Mar 19)

by sandy craine (Mar 18)

Hi Norma,
Where are you being treated? I am surprised that your doctor has not investigated your apparent resistance before and allowed you to remain at 5% Bcr/Abl for so long. What is your

by Norma_55 (Mar 17)
Category: Uncategorised

Replies: 3

Last updated: 19 March 2022
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