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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
Agile on 27 November 2021

Category: Other conditions

Replies: 3

Last updated: 10 February 2022

CML and Dental Issue
by (Feb 10)

Broken, crooked, missing teeth in the front do not add to our attractiveness and repel people from us. That's why we try to smile as little as possible and not show our front teeth. That's

by MiguelLucas (Feb 10)

What serious dental problems have you encountered?

by thomas.c (Nov 27)

Dear Amit,

I had multiple wisdom teeth extractions, they were all in bad shape, and a piece of my jaw bone had to come with them. It wasn’t fun, but CML didn’t interfere with

by Agile (Nov 27)

Greetings from India everyone!
My wife was diagnosed with CML almost a year ago.
The Imatinib/Glivec has worked wonders. However recently she had a bit of tooth ache in one of her tooth. That tooth
Category: Other conditions

Replies: 3

Last updated: 10 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
Nimbus2 on 9 February 2022

Category: Uncategorised

Replies: 0

Last updated: 9 February 2022

Professor Steve O'Brien update on CML
by Nimbus2 (Feb 9)

I listened to this live a couple of days ago. It is really worth a viewing.
"In this webinar we talked about the latest updates on chronic myeloid leukaemia (CML) and looked at the results of
Category: Uncategorised

Replies: 0

Last updated: 9 February 2022
sandy craine on 5 February 2022

Category: Uncategorised

Replies: 0

Last updated: 5 February 2022

Fascinating research: Some immune cells stay in the tissues for years.
by sandy craine (Feb 5)

Human immune cells not only circulate in the blood, but can also occupy certain tissues and sometimes remain there for years. A research team led by immunologist Christina Zielinski discovered this
Category: Uncategorised

Replies: 0

Last updated: 5 February 2022
Gian P on 3 February 2022

Category: Blood tests

Replies: 2

Last updated: 4 February 2022

CAR T CELL Treatment Cure for Leukemia
by Gian P (Feb 4)

I share this with my Onco doctor, she told me that this therapy is the last resource and can be very toxic for the body with high mortality rate... i am guessing is not for everyone, but, yes, i

by ColoradoGuy (Feb 4)

Wow. That is amazing. Great news for those with CLL. I remember when I was diagnosed being told that if you were going to have cancer CML was the one you wanted....Maybe not the

by Gian P (Feb 3)

I was reading about this article and found it very interesting, I figured to share it here.
https://amp.cnn.com/cnn/2022/02/02/health/cancer-t-cell-therapy-remissio...
Category: Blood tests

Replies: 2

Last updated: 4 February 2022
EvaH on 18 August 2021

Category: Blood tests

Replies: 42

Last updated: 3 February 2022

Here goes - first bcr/abl after dose reduction
by Gian P (Feb 3)

Vodka sounds great! I might have some 60 mml around... i can start with those;)
thank you!

by EvaH (Feb 3)

Oh lordy, triangle tablets...not easy!
Maybe you can dissolve them in something (vodka?) and use the required amount of liquid each day.

by Gian P (Feb 2)

i will definitely start that routine and keep everyone posted about the results, Buzz thank yiu for taking your time and articulate the process, i am still not sure how precise my splitting of the

by Buzzm1 (Feb 2)

Gian, based on the results of at least your last four quarterly BCR-ABL tests, you are in a plateau and should be able to begin gradually reducing your TKI dosage. For the benefit of others,
Category: Blood tests

Replies: 42

Last updated: 3 February 2022
David on 18 January 2022

Category: Uncategorised

Replies: 17

Last updated: 3 February 2022

Coronavirus - 4th Vaccination Dose
by scuba (Feb 3)

Additional information:
https://naturalnews.com/2021-09-10-neurologist-explains-why-vaccinated-p...

https://dryburgh.com/geert-vanden-bossche-open-letter-to-who-halt-all-co...

Geert Vanden Bossche

by AlastairC (Feb 3)

Richard I also had covid over Christmas. My wife and I were both pinged by the NHS app on 22/12 that we had on 18/12 been in contact with someone who had later tested positive. We did lateral

by Christine R (Feb 2)

Hi Richard
I completely agree with your 2nd paragraph. I prefer to take information directly from an expert and even press reports based on them can be written with a bias.
I think it is

by David (Feb 2)

Richard
Thanks for that. I totally agree with you about taking care when looking online in the area of vaccines. My wife will follow the advice of her Consultant who is, in turn, following the
Category: Uncategorised

Replies: 17

Last updated: 3 February 2022
Pusser on 31 January 2022

Category: Treating CML

Replies: 6

Last updated: 2 February 2022

Hello and a question
by Pusser (Feb 2)

Hi Felix,
Thank you for the heads up on that one :)
Really appreciated :)

by Felix (Feb 1)

Hi, not sure where you live ,but don't go to The Royal Liverpool.Their clinic is awful you wait for hours past your appointment time and the two specialists I saw there were absolutely horrible

by Pusser (Feb 1)

AlasatairC,
Thank you so.much, this exactly the page I was looking for.
Kind regards

by AlastairC (Feb 1)

If you click the "Patient Info" tab at the top of this page the second item on the drop down is a list of specialist CML Centres. I believe you can ask your GP to refer you to the most
Category: Treating CML

Replies: 6

Last updated: 2 February 2022