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vonnie on 6 June 2021

Category: Uncategorised

Replies: 4

Last updated: 7 June 2021

cramps
by Nimbus2 (Jun 7)

I had painful daily cramps on imatinib.
The very day I stopped using imatinib and started using dasatinib, the cramps went away never to return.
The curious thing is that I did get occasional cramps

by vonnie (Jun 7)

Hi i would like to say thanks to all who replied to my post its just nice to know i am not the only one
thanks Vonnie

by EvaH (Jun 7)

I used to get all sorts of weird cramps (fingers, toes, back, boob!!) , Two things help:

200mg magnesium daily

Light weight training of all muscle groups
Go easy with the weights at.

by pianogrl44 (Jun 6)

I’ve been on imatinib for 6 years and I do find leg cramps and even hand cramps quite common but they are much worse on days when I haven’t had enough water. I find I need to drink
Category: Uncategorised

Replies: 4

Last updated: 7 June 2021
Karinne on 21 December 2019

Category: Uncategorised

Replies: 7

Last updated: 7 June 2021

Curcumin
by scuba (Jun 7)

MMR on only 200 mg imatinib is excellent.
Curcumin is poorly absorbed by the body even with piperine (pepper). It takes a lot of Curcumin to be effective. But it does work if the dose is high enough

by Sd (Jun 6)

Hi Scuba,
I want to get started with Curcumin. I take imatinib 200mg a day. Have had CML for 20 months and have achieved MMR. My arthritis is increasingly bad, especially in my legs and feet. I will

by Karinne (Dec 29)

I never heard of it!. Thanks.

by Karinne (Dec 29)

Thanks Scuba. Very interesting.
Category: Uncategorised

Replies: 7

Last updated: 7 June 2021
Jmbnccyn on 26 May 2021

Category: Organising your life

Replies: 13

Last updated: 4 June 2021

How does the cml condition or limit you?
by EvaH (Jun 4)

Best of luck!

I'm sure you can have the life you want.
I was suboptimal at 3 months but was very quick to hit MMR (or so i was told)

by Jmbnccyn (Jun 3)

Hello, I am physically fine except for some side effects of the medication, however despite feeling fine, my CRP response for months 3 and 6 was suboptimal which does not help me feel calmer but

by EvaH (Jun 3)

Btw after getting better from CML, i developed a very serious retinal issue as a result of the CML. I spent one year being treated and without knowing how bad it might get - worse case scenario i

by EvaH (Jun 3)

Very sorry to hear you are going through this!
Sounds like you need support to get the life you want back. From what i read your struggles are primarily mental at this point. I'm assuming your
Category: Organising your life

Replies: 13

Last updated: 4 June 2021
Tater1 on 1 June 2021

Category: Uncategorised

Replies: 9

Last updated: 4 June 2021

Confused about next steps.. dose increase Sprycel
by onekayaker (Jun 4)

Hey CG.... May I ask what side effects have you experienced taking nilotinib?

by Tater1 (Jun 3)

Hi kat73,
I love Dr. Mauro and his team and am so grateful to him for many reasons. He is collaborative and supportive while also being honest and transparent. There was no pressure

by Tater1 (Jun 3)

Hi Heidi,
Thanks for this! You nailed it exactly. It’s hard to be a slow responder because of that initial anxiety lingering. It’s just hard, period, and I’m

by kat73 (Jun 3)

Wow, Tater, you are so lucky to be going to one of the world's leading lights in CML research - for God's sake, trust anything he says! You are in such an early phase of this fight -
Category: Uncategorised

Replies: 9

Last updated: 4 June 2021
TimoD on 31 May 2021

Category: Uncategorised

Replies: 2

Last updated: 1 June 2021

Secondary chromosomal change in a Ph+ cell
by TimoD (Jun 1)

Thank you!
I've read that study as well. Well, we will see if it has any negative effect on treatment. It's just that it is an unknown variable in my treatment process and makes me wonder

by ColoradoGuy (Jun 1)

Timo - I can't find the study now (I tried) but I read one that said t(x,22) was not a high risk. From everything I read 3, and 17 were a couple that should signal a change in approach. Also keep

by TimoD (May 31)

Hello everybody

Just wanted to ask if anyone had any experience with secondary chromosomal changes (i.e. additional chromosomal aberrations) in Ph+ cell.
During my 3 month bone marrow
Category: Uncategorised

Replies: 2

Last updated: 1 June 2021
FirefighterCML on 27 May 2021

Category: About CML

Replies: 6

Last updated: 30 May 2021

1st PCR test results on Sprycel after 14 weeks
by alexmcpee (May 30)

It’s resistance but you don’t want allow CML any chance to do what it wants. Adherence is really important but I do understand why sometimes it can’t be avoided. Also a lot of TKIs

by FirefighterCML (May 29)

Good to hear! I am going to talk to my oncologist at 6 months after my next PCR about it. I feel the TKI causes damage elsewhere in my body, particularly in my abdominal area. I

by FirefighterCML (May 29)

I didn’t know missing doses could cause mutations You have motivated me to do better.

by scuba (May 29)

Given your response, you should certainly consider lowering your dose. You might even consider 20 mg.
Category: About CML

Replies: 6

Last updated: 30 May 2021
Merlinlewis on 28 May 2021

Category: Blood tests

Replies: 2

Last updated: 29 May 2021

Tasigna Doesnt Seem to Work, increasing BCR ABL
by alexmcpee (May 29)

I understand your concern as you dipped below CCYR (1%) and then back up again. The jump looks a lot of paper but I don’t think really it’s that large. You’ve had a good response

by David Fitz (May 28)

Hi there,
Your doctor sounds sensible - give it a few more weeks, test again and if there's not an improvement switching is a smart move. PCR testing is imperfect and this rise could be just a

by Merlinlewis (May 28)

Hey everyone!
Ive been a quiet Reader in this Forum for about 6 Months now. Yesterday i got my bloodwork Back and im pretty concerned.
about me: 24 years old, Male, Diagnosed With 84% BCR ABL
Category: Blood tests

Replies: 2

Last updated: 29 May 2021
Reilly9108 on 29 May 2021

Category: Uncategorised

Replies: 0

Last updated: 29 May 2021

Sprycel and Cat 125 test
by Reilly9108 (May 29)

Hello
anyone ever have a cat125 test done
its been normal for 3 years now on Sprycel and it’s elevated
Category: Uncategorised

Replies: 0

Last updated: 29 May 2021
David Fitz on 11 May 2021

Category: Clinical trials

Replies: 4

Last updated: 28 May 2021

Updated eligibility: A study to investigate how CML patients respond to COVID vaccination
by David Fitz (May 28)

Guy's Hospital have been in touch to say they are expanding this trial to patients who either have not had their second dose of a COVID vaccine, or have had it but within the last 8 weeks.
They

by chrissie (May 15)

HI David
I have just emailed them asking if bloods could be taken down here and couriered - the same as when I was on DESTINY. The one stumbling block may, of course, be whether or not my GP ir

by David Fitz (May 14)

Hi Chrissie -
You could email and check - perhaps they could have the blood sent via courier or other means?
David.

by chrissie (May 14)

Hi David
Such a shame this is restricted to London. D you think they will be widening their search for CML patients meeting their criteria? I am in Mid Devon and I know of another CMLer in
Category: Clinical trials

Replies: 4

Last updated: 28 May 2021
Karinne on 11 January 2018

Category: Side effects

Replies: 13

Last updated: 28 May 2021

Pleural Effusion on Sprycel
by Julia.K (May 28)

Hi scuba
Thanks a lot for your reply. I will talk to my doctor, but you know, all these effusions do not mean much to doctors, especially here in Poland, doctors do not care much. I will try to

by scuba (May 21)

Hi Julia,
There is data (which I am trying to re-locate) which suggests pleural effusions induced by dasatinib (sprycel) are strongly correlated with enhanced CML response. In other words, your

by Julia.K (May 21)

Hi, where are you from? Probably from a civilized country, unfortunately I am from Poland. I developed pericardial effusion only after 2 months of sprycel 50mg eveey second day. I am in despair, as

by sandy craine (Apr 3)

What were the reasons for you to stop imatinib in the first place. Were you intolerant or resistant? If it was because of intolerance to imatinib, but had less side effects than the other TKIs you
Category: Side effects

Replies: 13

Last updated: 28 May 2021
J.Martin on 23 May 2021

Category: Side effects

Replies: 4

Last updated: 27 May 2021

Nilotinib and Covid vaccine
by koralia.pappi (May 27)

Hi!
On Nilotinib for two years. I had both my jabs of Pfizer, no real side effect apart from a day of fatigue and slight fever after the second one.
Regards,
Koralia

by Sally Martin (May 25)

Hi I’ve been on nilotinib since last Summer. I’ve had two jabs (Pfizer). No side effects at all except an achey arm.

by alexmcpee (May 24)

Hey I am in Nilotinib for 3 years and I have had 2 doses of the AZ (Oxford) vaccine. 1st dose I felt rough (flu symptoms) 2nd dose nothing at all.
You’re going to be fine but if you have a

by Dustylloyd (May 23)

Hi j,
like many others with cml have had both doses of covid vaccine, and like you have been on Nilotinib since September 2015, can honestly say I’ve had no side effects, a little nausea
Category: Side effects

Replies: 4

Last updated: 27 May 2021
skiinglaketahoe on 26 May 2021

Category: Uncategorised

Replies: 0

Last updated: 26 May 2021

Arthritis
by skiinglaketahoe (May 26)

Hi
Is there anyone who has experienced any significant change in their PCR whilst on arthritis medications? I am interested in hospital prescribed arthritis medications.
Thanks
Susan
Category: Uncategorised

Replies: 0

Last updated: 26 May 2021
ipmaki on 17 May 2021

Category: Treating CML

Replies: 7

Last updated: 26 May 2021

Long Time to Reach MMR
by David787 (May 26)

Fab! Well done...

by Patch (May 21)

Congratulations, Fantastic news.

by philmc (May 21)

Congrats Ian!

by cct121 (May 19)

Congratulations mate!
Hearing your results actually made me feel even better, because it took my roughly 3 years to reach that level as well. Glad your results have been positive!
Category: Treating CML

Replies: 7

Last updated: 26 May 2021
ishb1 on 12 May 2021

Category: Blood tests

Replies: 10

Last updated: 25 May 2021

Low Neutrophils..off Imatinib...rising BCR
by TimoD (May 25)

Hi Sally

Just out of curiosity, at what dose were you started on nilotinib? I pretty much have the same situation with you and I am currently on 200 mg twice a day nilotinib. My platelets

by Sally Martin (May 21)

Hi, I was diagnosed November 2019. Optimal initial response to imatinib but then within 5 months, my neutrophils had dropped to 0.8. It was March 2020, so peak Covid time and my haematologist was

by Crfharris (May 18)

What are your counts?

by scuba (May 15)

I was off for over three months - but by then I was taking Curcumin in high doses.
Category: Blood tests

Replies: 10

Last updated: 25 May 2021
Lisalater35 on 23 May 2021

Category: Children & young people

Replies: 1

Last updated: 24 May 2021

My new Results what does this mean..
by alexmcpee (May 24)

It is not uncommon to have the e1a2 transcript with the standard b2a2 and b3a2. I have only the 2 b2a2 and b3a2 which code for the P210 version of CML. I think the e1a2 which codes for P190 will

by Lisalater35 (May 23)

e13a2 (b2a2) transcript
0.0682
e14a2 (b3a2) transcript
0.6545
e1a2 transcript
<0.0032 %
My 6 month test
Category: Children & young people

Replies: 1

Last updated: 24 May 2021
ishb1 on 1 May 2021

Category: Children & young people

Replies: 8

Last updated: 23 May 2021

Covid Vaccine and Blood Work
by pianogrl44 (May 23)

I have a quick update too; after vaccine my BCR-ABL dropped from .06 down to .011, could be coincidence but I will take it! .011 is also my lowest result ever. That was after the first

by alexmcpee (May 9)

Ah yeah. As David says don’t get too excited when down and not too worried when up. Little wins are nice and they certainly give you the emotional strength to keep going. The ups not so much.

by kat73 (May 8)

Thanks Alex. Not getting excited about it, just as I steel myself not to despair when I get a number I don't like. I got one other undetectable (on my cancerversary actually) a

by alexmcpee (May 4)

Wow amazing news. Wouldn't it be amazing if it inadvertedly cured our CML :-). I am guessing this is a coinicidence and nothing more. But congrats Kat. One day maybe for a lot of us.
Category: Children & young people

Replies: 8

Last updated: 23 May 2021
JPD on 6 September 2020

Category: Uncategorised

Replies: 13

Last updated: 23 May 2021

Slightly high CBC -- freaking out.
by kat73 (May 23)

Yes, those are two good things to focus on. You're in the safe zone, as you know, on the PCR. It is hard to not be annoyed, I know. It's a miserable game and you want to

by JohnFromChicago (May 21)

My PCR is back up to .07 glad I am still in MMR but annoying to still be playing this game after 6 years wish I could just be .00X and sit back and forget about it. Oh well could be worse I suppose

by JohnFromChicago (May 15)

Glad to hear your are still doing well JP I remember you from the old LLS group days. Im still a turtle here in PCR I float around .02-.04. I recently had a similar CBC...lowest ever for me

by alexmcpee (Sep 19)

Fantastic mate,
Perfectly normal to worry when it happens to yourself you freak out!! When it happens to another CMLer you see things more logically. This is what happens when we think with our
Category: Uncategorised

Replies: 13

Last updated: 23 May 2021
Jmbnccyn on 13 May 2021

Category: About CML

Replies: 13

Last updated: 22 May 2021

cml overall survival data?
by Sunny (May 22)

Totally agree with you Eva. Unfortunately not everyone can subscribe to this tenet, that we are the captain of our own ship.
But by the same token, it is also true that sometimes life does throw us

by EvaH (May 22)

Survival data and survival analysis is a rather specialised branch of mathematics and frankly CML may be too rare to have enough numbers to perform this analysis.
At 20 years out from diagnosis,

by alexmcpee (May 20)

Cheers David,
That makes sense. I don’t know why that number has always played on my mind. I guess seeing so many people diagnosed close to the 100% and a few over like yourself made me feel

by TimoD (May 20)

Hi!
Thanks everybody for the support!
I agree, PCR results at my level can be inaccurate and fluctuate a great deal. I currently have the trend and take comfort in it. Hopefully my myelosuppression
Category: About CML

Replies: 13

Last updated: 22 May 2021
micheller on 12 June 2017

Category: Uncategorised

Replies: 1

Last updated: 20 May 2021

glivec
by Sd (May 20)

Hi,
I realize your text was written 4 years ago, but I have recently developed nighttime anxiety and panic attacks. Are you still having them? When? What have you done to resolve them? I am

by micheller (Jun 12)

Anyone developed anxiety & panic attacks been on glivec five years
Category: Uncategorised

Replies: 1

Last updated: 20 May 2021
SS86 on 16 May 2021

Category: Side effects

Replies: 1

Last updated: 19 May 2021

Burning sensation on breast area
by ColoradoGuy (May 19)

If it persists I would get it checked out. I have had strange sharp sensations in my big toe. They don't last long and I honestly forget about it until other people ask about strange

by SS86 (May 16)

Hi,
My wife is having a very mild burning sensation around her breasts. It initially started with a pain on the left side and then it turned into a burning sensation on the left side. Now she has
Category: Side effects

Replies: 1

Last updated: 19 May 2021