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EvaH on 6 December 2019

Category: Food & fitness

Replies: 5

Last updated: 29 December 2019

Importance of Magnesium video by a Cardio guy
by Nimbus2 (Dec 29)

I purchased magnesium taurate. The package indicates "MAGNESIUM TAURATE" but in small letters shows "Magtein Magnesium L-Threonate, Magnesium Glycinate, Magnesium Taurate". All

by Nimbus2 (Dec 8)

Thank you, Scuba. I cannot afford a laxative effect with the problems that I already have with imatinib generics. I will junk the former when they arrive and I have reordered.

by EvaH (Dec 8)

I need my brain more ;)

by scuba (Dec 8)

A guide to the different Magnesium complex':
http://peoplesrx.com/the-best-kind-of-magnesium-for-you/
Magnesium Oxide is the least expensive and the least absorbed. It is what is used in
Category: Food & fitness

Replies: 5

Last updated: 29 December 2019
Sd on 28 December 2019

Category: Side effects

Replies: 2

Last updated: 28 December 2019

Rash from imatinib
by Felix (Dec 28)

Hi, I used a simple vitamin E cream ,it eventually took the itchiness and redness out ,the little bumps remained but didn't bother me anymore .The whole lot disappeared within days when I

by Aeje10327 (Dec 28)

I think it depends. There seem to be some that do and some that don't. Mine didn't and I was recently switched to Sprycel.

by Sd (Dec 28)

How are people handling the rash from imatinib? Does it ever resolve?
Category: Side effects

Replies: 2

Last updated: 28 December 2019
ThomasS on 26 December 2019

Category: Uncategorised

Replies: 4

Last updated: 28 December 2019

Sprycel-Irregular Heartbeat
by ThomasS (Dec 28)

Thanks kirk. Good article. The cardiologist called and he even said the Sprycel might have something to do with the irregular heartbeat? The knee surgery has been cancelled a couple of times now. I

by RC Kirk (Dec 28)

Here's another article I'd forgotten about.
Case report - Reversible ventricular arrhythmia induced by dasatinib https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4184536/

by ThomasS (Dec 28)

Kirk, thanks for the reply. Interesting article. I'm pretty sure the sprycel had something to do with the irregular heartbeat. I went to the cardiologist today and he said everything is now

by RC Kirk (Dec 27)

Hi Tom,
Here's a link to an article: Cancer Treatment–Induced Arrhythmias
Focus on Chemotherapy and Targeted Therapies
https://sci-hub.se/10.1161/CIRCEP.117.005443
I have
Category: Uncategorised

Replies: 4

Last updated: 28 December 2019
vivbow on 27 December 2019

Category: Other conditions

Replies: 9

Last updated: 28 December 2019

night sweats
by vivbow (Dec 28)

hmmm. I'll check in with my doctor about that. Thanks for the suggestion.

by Buzzm1 (Dec 28)

vivbow, 200mg/day would be easier on your system.

by vivbow (Dec 28)

I have. 4 pills every other day is keeping me n remission. Tried to go off a year ago but it wasn't successful. So I accept my good fortune that this medicine works for me

by vivbow (Dec 28)

Olivia,

thank you. Ive just been living with it, like cramps and edema, and accepting but just thought since I'm new to the Forum that I would check and see if anyone else has this
Category: Other conditions

Replies: 9

Last updated: 28 December 2019
israel on 27 December 2019

Category: Organising your life

Replies: 1

Last updated: 27 December 2019

Cold shower
by alexmcpee (Dec 27)

I’d also add that having CML or any form of cancer can cause depression. This defo effected me for a time and I had massive fatigue, I wanted to sleep all the time, even not long after waking

by israel (Dec 27)

Hi,
Have you tried taking a cold shower to fight off fatigue?
I have never experienced heavy symptoms from TKI, don't blame it for everything negative I feel, but after spending a week of just
Category: Organising your life

Replies: 1

Last updated: 27 December 2019
StewartOC on 9 August 2019

Category: Side effects

Replies: 7

Last updated: 27 December 2019

Bosulif / Bosutinib - Mobility Issues
by alexmcpee (Dec 27)

Hi Stewart!
We met at Kings college for the CML presentation back in the summer and got the tube together if you recall. I am glad that Bosutinib seems to be reducing your BCR, but sorry to hear

by StewartOC (Dec 27)

Hi all,
Just a wee update. My legs and fatigue remain pronounced but otherwise things seem ok. It's pretty frustrating only being able to do one thing a day and falling asleep in the late

by onekayaker (Dec 16)

Hello Stewart,

I was eased into 300mg bosilif after failing on sprycel 50mg. My issue was balance. I was unable to paddle board after starting Bos. and when walking down

by Diane CW (Dec 15)

Hi Stewart
I was diagnosed two years ago and started off on Nilotinib but had to come off because it reduced my platelet count too much. So I have been on Bosutinib for just over a year now, started
Category: Side effects

Replies: 7

Last updated: 27 December 2019
janita on 25 December 2019

Category: Treating CML

Replies: 4

Last updated: 26 December 2019

Newly diagnosed
by Buzzm1 (Dec 26)

Janita, allow me to re-ask part of David's question: What dosage of Nilotinib are you on?
You may be able to reduce your dosage to help reduce the side-effects you are experiencing

by alexmcpee (Dec 26)

Hi Janita
Congrats to you both. A day let alone week prob will make little difference as my doc says. But wouldn’t take the risk regularly even once a month.
I am too on Nilotinib and have

by janita (Dec 25)

Hi
mom in Tasmania Australia I am taking Nilotinib twice a day only been on them for 3 weeks and my levels have dropped dramatically already (yayyy) my dr says I have to give my body time to

by David Fitz (Dec 25)

Hi Janita,
Not taking your meds for one single day won’t cause any issues - but if missed more than one time a month (perhaps less) then it can cause problems. But if you are having side
Category: Treating CML

Replies: 4

Last updated: 26 December 2019
Tater1 on 24 December 2019

Category: Blood tests

Replies: 2

Last updated: 25 December 2019

Medication Hold
by Tater1 (Dec 25)

Merry Christmas to you too! I haven’t had a FISH test since my diagnosis one month ago, but it was 96%.

Thanks for all your support and advice. It means

by scuba (Dec 25)

Your Neutrophils are low, but not dangerous. You should stay off sprycel until your neutrophils rise above 1.0 - 1.2. Your red blood cells are a bit low as well, but I suspect that is your system re

by Tater1 (Dec 24)

Hi everyone! Happy Holidays to you all....
I have been on 100 mg Sprycel for three weeks, and due to neutropenia, I am on a medication freeze until my counts are back up. I do
Category: Blood tests

Replies: 2

Last updated: 25 December 2019
mamodei on 24 December 2019

Category: Uncategorised

Replies: 1

Last updated: 24 December 2019

Winter Thoughts
by alexmcpee (Dec 24)

Hi Maria,
A very nice post. And I’ve read your blog. The early days of CML are hard or at least were for me too. It takes a lot of adjusting and a complete change of perspective.... this was

by mamodei (Dec 24)

I'm a relative newbie to coping with CML, or in my case coping with the drugs since my CML has been easily set back with the medication. This forum has helped me greatly with information,
Category: Uncategorised

Replies: 1

Last updated: 24 December 2019
joansullivan031278 on 21 December 2019

Category: Blood tests

Replies: 1

Last updated: 21 December 2019

Call from Oncologist said beginning stages of CML scared
by David Fitz (Dec 21)

Hi Joan,
Are these figures at the point of diagnosis of CML? If so, they are very low
CML doesn’t run in families. It is genetic in nature, but isn’t passed from parent to child.

by joansullivan031278 (Dec 21)

B2a2 is% 0.115

B3a2 is% 0.097
I'm very scared. What happens next? Cancer runs very rampant in my family but no cml that I'm aware of. Any help is appreciated.
Category: Blood tests

Replies: 1

Last updated: 21 December 2019
mamodei on 20 December 2019

Category: Side effects

Replies: 2

Last updated: 21 December 2019

Chest pain - Sprycel/dasatinib
by mamodei (Dec 21)

Thank you so much for taking the time to put together this list of links. I'll sit down tonight and go through all of them thoroughly as a quick reading shows there is even more

by RC Kirk (Dec 21)

Hi Maria,
I've experienced chest discomfort and weird heartbeats since starting dasatinib. I manage it by going back to imatinib for a while until it feels better. I've had some

by mamodei (Dec 20)

Has anyone had experience with chest pain/pulmonary issues with dasatinib? If so, how was it resolved? What did it feel like? If it was a matter of going off the Sprycel how long
Category: Side effects

Replies: 2

Last updated: 21 December 2019
MartinZA on 19 December 2019

Category: Treating CML

Replies: 6

Last updated: 20 December 2019

80% reduction in BCR-Abl
by scuba (Dec 20)

I do - some weights, mostly cardio (HIIT).
It's a myth fasting erodes muscle mass. During a fast, the body requires about 4 grams of glucose a day to maintain a bare minimum of circulating

by Mick E (Dec 20)

Scuba
do you do any physical training at all? I’m interested to how fasting can affect the bodies ability to retain muscle mass.

regards
Mick Ellison

by scuba (Dec 20)

The first fast is the toughest because your body likely never had to "manufacture" ketone making enzymes before. So when you deprive your body of carbs (food in general), the metabolic

by MartinZA (Dec 20)

Scuba, thanks so much for this tip!
I'm going to try it this weekend and let you know what happens. I have bought the ketone strips but didn't bother using them because I couldn't reach the 48
Category: Treating CML

Replies: 6

Last updated: 20 December 2019
AliceN on 19 December 2019

Category: Treating CML

Replies: 3

Last updated: 20 December 2019

Calcium deficiency
by scuba (Dec 20)

HI Alice,
All TKI's affect our electrolytes - Na, K, Mg and Ca. Na and K are very easy to obtain through diet, sometimes too much and are not usually a problem - but Mg is more difficult to

by AliceN (Dec 20)

Hello and thank you,
My vitamin D is ok, it has been on the low side from time to time but mostly ok. I think you are correct in that vitamin D is an important contributor to Calcium levels.

by RC Kirk (Dec 20)

Hi Alice,
I looked back at my test results and calcium levels seem to have been stable for me.
Do you know what your vitamin D level is? If it's low, I've heard it can cause problems

by AliceN (Dec 19)

I was diagnosed in 2017 and been on imatinib since then. I'm tolerating the imatinib pretty well but my gp is concerned about low calcium levels. Does anyone have any experience or problems with
Category: Treating CML

Replies: 3

Last updated: 20 December 2019
FancyNancy on 18 December 2019

Category: Children & young people

Replies: 12

Last updated: 19 December 2019

Newly diagnosed with cml
by FancyNancy (Dec 19)

Kirk,
Ahh yes the memory issue. I have that as well. Posting is a great idea.
My platelets are 1302
Nancy

by RC Kirk (Dec 19)

Hi Nancy,
I keep a record of my CML journey on my LLS profile page so I can quickly look up my history. My memory isn't what it used to be.
Also, it allows my fellow forum members to see

by FancyNancy (Dec 19)

Great hearing your story, David!!
And thanks so much for sharing the other resources. Extremely helpful to my husband (Mark) and I.
I'm so glad things are going well for you now.
Nancy

by FancyNancy (Dec 19)

Hey Kirk,
Heinrich is down by the river now. There are 2 buildings. Bldg 1 and bldg 2. it almost reminds me of a Dr. Seuss story. Lol
I've been on Imatinib for 2 weeks and so far have been doing
Category: Children & young people

Replies: 12

Last updated: 19 December 2019
koralia.pappi on 17 December 2019

Category: About CML

Replies: 3

Last updated: 19 December 2019

Christmas present - MMR!
by MartinZA (Dec 19)

Wow that's wonderful news! Onwards and downwards!
With regards from South Africa
Martin

by VickyK. (Dec 17)

That's great Koralia!!!! Congratulations!!!Merry Christmas to you and your family!!!

Best

Vicky

by mamodei (Dec 17)

Wonderful news, Merry Christmas!

by koralia.pappi (Dec 17)

Hi all,
Just on the 6-month mark on Tasigna, I reached MMR :-)
May 58%
Sep 0.32%
Nov 0.092%
The feelings that these news bring are amazing :-) Onwards to better results!
Thanks to all of you
Category: About CML

Replies: 3

Last updated: 19 December 2019
jriccoboni on 19 December 2019

Category: Uncategorised

Replies: 2

Last updated: 19 December 2019

New drug
by MartinZA (Dec 19)

Thank you for posting this - I have long been wondering what progress is being made with asciminib! Hopefully the research continues and there is even more to come in the future.

by RC Kirk (Dec 19)

It looks like they've been testing this one for at least five years now. Hopefully it's a keeper and will benefit us all.
Here's a link to some more links about ABL001 (Asciminib

by jriccoboni (Dec 19)

Wanted to share this article with everyone. Good news it sounds like with a new drug with less side effects.

https://www.sahmri.org/precision-medicine-theme/news-278/?fbclid=IwAR0
Category: Uncategorised

Replies: 2

Last updated: 19 December 2019
Mick E on 11 December 2019

Category: Uncategorised

Replies: 8

Last updated: 18 December 2019

Nilonotib update
by Mick E (Dec 18)

Hello TJ
im now on 2nd month of Nilonotib and this is the 1st month of 300mg once daily. This is my 4th TKI and Dasatinib was causing pulmonary hypertension so had to come off it. I

by TJ.B (Dec 18)

Hi Mick, how long did you say you were on Nilotinib now ? Would it be worth switching again? my consultant is going to swap me to Dasatanib if my levels rise on 150 twice daily . As you say it

by Mick E (Dec 17)

I shan’t forget those cramps on imatinib! My wife nearly wetting herself laughing at me prostrate on the floor and the lifeguards at the swimming pool running around like a scene from

by Jens (Dec 17)

My doctor did not say anything about not taking nilotinib at night but I guess as always check with your doc. I took imatinib at night, my doctor said it was ok. Good that the joint pain is less
Category: Uncategorised

Replies: 8

Last updated: 18 December 2019
MANNI OBEROI on 17 December 2019

Category: Uncategorised

Replies: 3

Last updated: 18 December 2019

MY RT PCR RESULTS
by David Fitz (Dec 18)

In terms of treatment response and survival, none really. MMR (0.1%) is the “safe haven” zone. If you keep taking your pills and your result never changed you are still doing great.
Over

by MANNI OBEROI (Dec 18)

Thanks alot david.....how many more goals to achieve

by David Fitz (Dec 18)

PCR results on international scale of 0.10% means you are at exactly MMR, which is the primary goal of any CML treatment.
Congratulations!
David.

by MANNI OBEROI (Dec 17)

Hi all I am ramandeep....34 from india.....my Rt pcr results after 4 months are below........p210 bcr abl rearranged copy 18......p190 bcr abl copy number 0.......ABL COPY NUMBER 11099......
Category: Uncategorised

Replies: 3

Last updated: 18 December 2019
Vasile Balc on 17 December 2019

Category: Uncategorised

Replies: 3

Last updated: 17 December 2019

Recently diagnosis with LMA
by David Fitz (Dec 17)

Hi Vasile,
I’m afraid the expertise on this site are for CML, which is quite different and treated differently to AML.
Macmillan have a discussion forum here which might help you, and there

by Vasile Balc (Dec 17)

I am from Romania
My diagnosis is : Acute myeloid leukemia

by David Fitz (Dec 17)

Vasile,
Are you from a French speaking country? LMA (AML in English) is an acute leukaemia, not a chronic one like CML (or LMC in French).
If that’s wrong, what do you mean by LMA?
David

by Vasile Balc (Dec 17)

Hi !
i am so confused what i need to do or where i need to go ! Please help me !
Category: Uncategorised

Replies: 3

Last updated: 17 December 2019
DKurup on 29 July 2019

Category: Treating CML

Replies: 1

Last updated: 17 December 2019

No more Sandoz, Others cause side effects, Whats next?
by Julia.K (Dec 17)

Hi there, I am in the same situation, after discontinuation of Gleevec in 2014, I have been taking various generics, now I've lost MMR, no way to get Sandoz in my country though. What do you

by DKurup (Jul 29)

Hi,
Quick background: I had CML since May 2015, now, 39 yrs, was on Glivec 400 initially, gained MMR within 4 months, reduced side effects after first 6 months.
After first 2+ yrs on Gleevec, NHS
Category: Treating CML

Replies: 1

Last updated: 17 December 2019