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Victoria Parker on 5 February 2021

Category: About CML

Replies: 21

Last updated: 15 August 2022

Do you ever feel ‘normal’ on TKIs
by Kamil (Aug 15)

If my understanding is correct- the doctor who prescribed you 500mg Dasatinib daily should lose their Dr’s license. No idea where he/she got the idea of such dosage, the maximum dosage

by Kamil (Aug 15)

If my understanding is correct- the doctor who prescribed you 500mg Dasatinib daily should lose their Dr’s license. No idea where he/she got the idea of such dosage, the maximum dosage that

by EvaH (Aug 13)

I'm not sure if this is helpful but after 5 years on tkis (imatanib in my case), I'm on trial tfr since Nov 2021. Since march 2022 i feel achy all the time, so it would seem that life without tkis

by DavidS (Aug 10)

Ive now been on it for 18th months at 500g a day.. to be honest I feel good on it, always take them with a meal, I find breakfast time good.. if you do get the runs then persist as it will
Category: About CML

Replies: 21

Last updated: 15 August 2022
Tedro on 5 August 2022

Category: Side effects

Replies: 12

Last updated: 12 August 2022

pleural effusion
by Tedro (Aug 12)

Then I must find new Drs.
I await VA grant or deny to new care, particularly Dr Cortes.
Thank you.

by scuba (Aug 12)

https://www.drugs.com/dosage/dasatinib.html
https://ashpublications.org/blood/article/134/Supplement_1/4150/424373/P...
https://www.clinical-lymphoma-myeloma-leukemia.com/article/S2152-2650(16)

by Tedro (Aug 11)

Where can I read the different levels of Dasatinib/CML responses?
Eg, I am in Complete Cytogenic Response; I am not in Complete Molecular Response.
Plus, I have CLL. So I’m trying to figure

by Tedro (Aug 10)

Yesterday Pulmonary Dr wants chest another xray, depending on what he sees (remaining pe) then he will look for his idea of possible Chylothorax.
ct scan, etc.
if and when he gives ok/all clear to
Category: Side effects

Replies: 12

Last updated: 12 August 2022
onekayaker on 2 September 2018

Category: Uncategorised

Replies: 18

Last updated: 10 August 2022

Please advise on Bosutinib 100mg Starting Sept 5 after failing on 100mg and 50mg Dasatinib
by sue. R (Aug 10)

Thanks, that good to hear. Yes it’s the shortness of breath is the reason.

by alison (Aug 10)

@sueR my husband has been on Bosulif 100 for two years with no side effects. He had lots of problems with shortness of breath on Sprycel 70 and then 50.
bosulif 100 is VERY low dose

by sue. R (Aug 10)

Awe, this is good news I start tomorrow on Bosutinib after being on Spyrcel for 5 years. Both is 100 mg.
only side effect from Spyrcel was tiredness but recently pleural effusion.

by sue. R (Aug 10)

Are you still on 100 mg, I am starting tomorrow having been on Spyrcel 100 for 5 years just start getting pleural effusion.
all blood work perfect, only side effect, I was a little
Category: Uncategorised

Replies: 18

Last updated: 10 August 2022
gdesposito on 5 August 2022

Category: Blood tests

Replies: 2

Last updated: 9 August 2022

Cause for concern?
by gdesposito (Aug 9)

Thank you. Yeah that’s the trick, trying find that sweet spot, keeping you in MMR or better while maintaining blood levels.

by ColoradoGuy (Aug 7)

Not much difference in these two results. I would consider regular bounce. It is great news that you are trending down overall. I would keep a close eye on blood levels and use the minimum mg TKI

by gdesposito (Aug 5)

First time posting

Diagnosed 9/2/2020
BCR-43.66% Started on Tasigna 600mg/day
stopped on 12/24/20 due to elevated liver enzymes, low WBC and low platelets(29,000)
started on
Category: Blood tests

Replies: 2

Last updated: 9 August 2022
Anonymous (not verified) on 30 December 2014

Category: Uncategorised

Replies: 5

Last updated: 8 August 2022

Bosutinib
by sue. R (Aug 8)

Thanks for sharing this, I was on Spyrcel for 5 years but due to pleural effusion I am changing to Bosutinib.
hope I don’t get thining hair as my has just grown back.

by Anonymous (Jan 1)

Happy New year to you Lusia. Thank you for replying I am feeling a little better about things. Some of your side effects have been part of my concerns..diarrhoea-nausea also the skin problems..I

by Anonymous (Jan 1)

Happy New Year. Thank you for replying. I am glad to read that you have not had many issues with this drug. I am feeling a little better about things. I would like to contact you directly and will

by karen (Dec 31)

Hello
I have been on Bosutinib for over a year and can honestly say it has been the best drug of all five. I have been lucky with the gastric issues (not suffered any) although at 300 I did have
Category: Uncategorised

Replies: 5

Last updated: 8 August 2022
Shekhar on 5 August 2022

Category: About CML

Replies: 5

Last updated: 8 August 2022

CML recovery stage and GOUT
by Vikram (Aug 8)

Congratulations for TFR
Best wishes.... For TFR
Thank you for reply

by Shekhar (Aug 8)

Thank You Vikram, by BCR details
Sep 8, 2015 0.0379%
Jul 1, 2016 0.0012%
Jan 5, 2018 0.0097%
Sep 28, 2018 0.0065%
July 7, 2019 0.0059%
Feb 10, 2021 0%
Dec 11,

by Shekhar (Aug 8)

Thank You, As per the doctors after stopping Gleevec. In some cases it increase the level of Uric acid in the body.

by Vikram (Aug 7)

Hii Shekhar
Before tfr your bcr ??
How many year undetactable??
Congratulations for TFR
Category: About CML

Replies: 5

Last updated: 8 August 2022
Rocky Mountain Gal on 23 July 2022

Category: Blood tests

Replies: 1

Last updated: 6 August 2022

Fasting and CBC draw
by JoeP (Aug 6)

I used to fast a lot. It seemed to help even before a blood draw. But not sure the results are definitive with fasting. For one thing I know when I did fast under imatinib it actually was not good

by Rocky Mountain Gal (Jul 23)

I am finishing a 3 day fast today. Not as bad as I thought! Question: Should I go in for my blood draw before or after I break my fast?
Category: Blood tests

Replies: 1

Last updated: 6 August 2022
Sd on 5 August 2022

Category: Side effects

Replies: 2

Last updated: 5 August 2022

altitude, imatinib and CML
by Sd (Aug 5)

Thanks for replying. The visit was good. Beautiful place indeed

by Rocky Mountain Gal (Aug 5)

Completely normal response to the change in altitude for anyone, with or without CML. I live at 5200' and am constantly telling friends who visit to give themselves time to adapt.

by Sd (Aug 5)

Does anyone have any information about the affects of altitude change? I was diagnosed 3 years ago. I am very well controlled on 200 mg of imatinib daily. A recent trip to Denver left me
Category: Side effects

Replies: 2

Last updated: 5 August 2022
Rocky Mountain Gal on 16 July 2022

Category: Getting help

Replies: 18

Last updated: 4 August 2022

I’m trying to not freak out
by Rocky Mountain Gal (Aug 4)

Thanks. I'm still going in for bi-monthly blood draws, so I'll see if my doc will add it. How long did it take for you to reach 1%?

by scuba (Aug 4)

In Colorado you can schedule a blood draw at any Quest diagnostics for a vitamin D test. Or you can visit your doctor and do the same.

by Rocky Mountain Gal (Aug 4)

Thanks for the encouraging words, Scuba. I am taking 125 mcg (5000IU) of vitamin D3K2 every day and walking my dog in shorts and a t-shirt for sun exposure every morning. How do I

by scuba (Aug 4)

At diagnosis I was at 155% PCR (> 100% is possible because of the way the test is calibrated to the abl gene). I was borderline blast crisis and had a bunch of other genetic abnormalities going
Category: Getting help

Replies: 18

Last updated: 4 August 2022
bdmemphis on 25 August 2016

Category: Treating CML

Replies: 18

Last updated: 2 August 2022

Optimal (or suboptimal) response timeline
by ColoradoGuy (Aug 2)

For those worried about BDMemphis and others in similar slow responses I can confirm that BD is doing well with his treatment as of July 2022. I sometimes worry when people drop off of the

by AlastairC (Mar 13)

Hi,

Speed of response is very variable; this forum has referred to tortoises and hares on many occasions. There are people who get to MMR in 3-6 months (hares), and some who take several

by Ontasigna (Mar 13)

Hi David/sandy,
Pulling back an old post for reference.
I am just trying to understand why the pcr does not hit optimal response for few.
Considering efficasy and potent nature of nilotnib. It

by Job Guerra (Mar 13)

BDmemphis can you provide any updates? I'm curious because I also have not seen 0.1. Had 0.111 from bmb at 16 months (no mutations) but actually went up at 18 months rather than dropping that
Category: Treating CML

Replies: 18

Last updated: 2 August 2022
Lisalater35 on 1 August 2022

Category: Children & young people

Replies: 3

Last updated: 1 August 2022

BCR results after a spike.
by Lisalater35 (Aug 1)

David,
Also I ask Dr if my counts could rise due to low vitamin D, he said no. I went on Vitamin D, and it went down. It’s a mystery that for sure.

by Lisalater35 (Aug 1)

David,
Right? I was not believing the higher one 3 months ago, because my bloodwork was all great for the first time. I asked the Dr if this could be a lab error, he said no much of that one. My

by David Fitz (Aug 1)

It’s never nice seeing that sort of jump, is it? No matter how many of us will advise you “don’t worry, a one-off result can just be a blip” it’s still scary!
So I

by Lisalater35 (Aug 1)

So, I just received my new BCR results today after a jump.
5/18/21 0.655
10/17/21 0.367
01/4/22 0.185
04/19/22 0.892
07/22/22 0.0032
Its been a roller coaster the last three months stressing if I
Category: Children & young people

Replies: 3

Last updated: 1 August 2022
vonnie on 6 July 2021

Category: Uncategorised

Replies: 5

Last updated: 11 October 2022

Nausea increases when taking antibiotics
by Rosiem (Aug 1)

Hello,
I've started taking 2 tablespoons of Kefir yoghurt with my porridge in the morning to improve the quality of the gut flora in my digestive system and help with digestive issues caused by

by AlastairC (Jul 19)

Thanks John. One of the things which informed my father's thinking was observing the health issues in a comparatively small population over 33 years. This one comes from the farming community

by johnw1001 (Jul 17)

Hi Alistair,
It seems that this is good advice from your father/GP who would seem to have been ahead of his time because latest thinking and research shows the importance of gut flora and the health

by vonnie (Jul 6)

Thank you very much for your reply comforting to know

Vonnie
Category: Uncategorised

Replies: 5

Last updated: 11 October 2022
chevyflame on 30 June 2018

Category: Treating CML

Replies: 17

Last updated: 30 July 2022

Pleural Effusion
by LL12 (Jul 30)

Thank you cousineg2, I have an appoint with pulmonary Tuesday 8-2, and planning to discuss options I've come across, this gives me some time to check the info you've sent.
I'm 2

by kat73 (Jul 29)

I remember that episode, too! Kind of Swiftian, as well.

by chevyflame (Jul 28)

Thank you for the message. Glad to hear that you are doing well at the 20mg dose. I hope that continues for many years.

There is a bill currently in front of the Senate which covers more

by kat73 (Jul 28)

I am so sorry to hear this, and offer my heartfelt condolences to you. Thank you for writing to us all and telling us. I remember ChevyFlame from "the old days" on the LLS site
Category: Treating CML

Replies: 17

Last updated: 30 July 2022
Richard on 23 July 2022

Category: Treating CML

Replies: 4

Last updated: 29 July 2022

Doctor suggests that I should stop Imatinib
by JoeP (Jul 29)

Congrats Richard after 16 years that’s quite a journey. I was on Imatinib for 11 years before it stopped working. I agree with David if you are undetectable and have few or tolerable side

by David Fitz (Jul 24)

Hi Richard,
To offer a different viewpoint, if your CML is well controlled and you don’t have major side effects from imatinib what is to be gained by coming off it?
The 75% figure is rather

by Richard (Jul 24)

Thanks for your advice, Buzz.
It has taken me 16 years to get to where I am now. Should CML rear its ugly head again, I fear that I might die with it, or of it, neither of which is a good option.

by Buzzm1 (Jul 24)

Richard, yes, you should try stopping Imatinib; you have absolutely nothing to lose. Should you relapse, lose MMR 0.1, during this attempt, convince your hematologist to restart you on a
Category: Treating CML

Replies: 4

Last updated: 29 July 2022
AlastairC on 28 February 2022

Category: Drug-drug interactions

Replies: 19

Last updated: 27 July 2022

Imatinib/Anticoagulants interaction when having surgery
by AlastairC (Jul 27)

Just a quick update 6 days post operation.
I stopped my 200mg imatinib 48 hours before the procedure. My last 3 BCRABLs have been undetectable.
All went well in surgery. I had a spinal anaesthetic

by Vikram (Jul 23)

Hello Alistair

by Vikram (Jul 21)

Hii Alister,
Your Last able bcr... undetactable? And continue?
Your imtanib dose?
400 / 200 ?
One more question
What your doctor recommended general anesthesia ya local anesthesia?
General

by AlastairC (Jul 20)

Just a quick update.
Surgery was scheduled for 4 August, and my haematologist had said to stop my imatinib a week before, and restart once my wound had healed.
HOWEVER, this morning the hospital
Category: Drug-drug interactions

Replies: 19

Last updated: 27 July 2022
Batman0424 on 25 July 2022

Category: Blood tests

Replies: 1

Last updated: 26 July 2022

Low Counts?
by alexmcpee (Jul 26)

MartinZA who posted a similar question on here is in a similar position with all of a sudden low counts although as far as I know his BCR is still ok - your wife is no doubt having a 2nd biopsy

by Batman0424 (Jul 25)

Hello,
My wife was diagnosed with CML in November 2019 and has been on dasatinib since. Her counts have always been low, but recently her dr's office has suggested that a bone marrow
Category: Blood tests

Replies: 1

Last updated: 26 July 2022
alexmcpee on 15 November 2018

Category: Side effects

Replies: 13

Last updated: 25 July 2022

Trapped nerve or TKI symptom
by David Fitz (Jul 25)

As my grandfather said, you need good shoes and a good bed. Because if you’re not in one, you’re in the other.

by saseder (Jul 25)

I’ve met some people with this syndrome, and all of them told me that a part of the solution was getting good pillows and sleeping in the correct position. We sleep for about one-third of our

by JoeP (Jul 21)

A good pillow is worth it’s weight in gold. I have had probs with my neck for over 20 years due to a degenerative disc in c4-c5. Of course made worse by TKIs. I learned early on a pillow is

by JoeP (Jul 19)

I do believe it’s possible. Some people on this forum are in TFR, treatment free response. So it’s possible. You have to sustain MR4.5 for something like 2 or 3 years straight
Category: Side effects

Replies: 13

Last updated: 25 July 2022
vineet on 15 July 2022

Category: Blood tests

Replies: 3

Last updated: 25 July 2022

observed immature granulocytes cell(0.2%) in blood report achived mmr 9 months ago
by Tater1 (Jul 25)

Hi. I have had higher immature granulocyte counts periodically and when asked my Dr responded that they see these numbers come up in many patients from time to time. He emphasized that

by MartinZA (Jul 25)

Hi there
I'm not a doctor so don't want to say too much about the immature granulocytes except that I thought these were associated with inflammation, not leukaemia (I thought they are

by An (Jul 17)

Isn't immature granulocytes and basophils within range?if hb is low rdw will be low.

by vineet (Jul 15)

hi all , i am cml patient in sept 2019,my recent bcr abl test was on may-22 last week and i was in mmr (0.04 IS scale).i am on dasatanib. my wife asked me to do full body
Category: Blood tests

Replies: 3

Last updated: 25 July 2022
cousineg2 on 23 July 2022

Category: About CML

Replies: 1

Last updated: 25 July 2022

Convert your PCR result from % to log or vice versa from log to %.
by Sunny (Jul 25)

Thank you guys, these two replies are so very helpful. I was always a bit vague about it, now finally have an explanation and handy reference. Brilliant.
pigeon.

by David Fitz (Jul 23)

Log results are pretty easy to calculate in your head.

100% = no log drop
10% = 1
1% = 2
0.1% = 3 (hence MR3, or MMR)
0.01 = 4 (MR4)
0.001 = 5 (MR5)

Like the metric system, it’s all very
Category: About CML

Replies: 1

Last updated: 25 July 2022
sandy craine on 23 July 2022

Category: Treating CML

Replies: 0

Last updated: 30 August 2022

iCMLf Conversations- 1) Treatment after failure of 2 TKIs ; 2) Meet the CML Experts
by sandy craine (Jul 23)

1) Current practices for third-line management of CML and get first-hand expert knowledge from:
Professor Andreas Hochhaus
Head of the Department of Hematology and Medical Oncology,
Jena
Category: Treating CML

Replies: 0

Last updated: 30 August 2022