iCMLf Newsletter 2022

TFR in chronic myeloid leukemia: Lights and shadows. In several studies, NK cell numbers or functional subsets of NK cells were shown to be higher in patients who maintain TFR

Discontinuation of Tyrosine Kinase Inhibitors in Patients with Chronic Myeloid Leukemia: a Review of the Biological Factors Associated with Treatment-Free Remission

Top Vitamin D Research Papers- 2021

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David Fitz on 12 March 2022

Category: Uncategorised

Replies: 2

Last updated: 10 April 2022

Pinned“My CML” phone app now available
by Wendy Turner (Apr 10)

this will be super useful for all of us I think. thanks to everyone involved in creating this app.

by MartinZA (Mar 28)

Hi David
This is brilliant and looks super-useful! Thank you so very much for all the research - I remember answering the survey questions a while ago.
I'm going to download it immediately and look

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: 2

Last updated: 10 April 2022
David Fitz on 17 December 2021

Category: Uncategorised

Replies: 0

Last updated: 14 January 2022

PinnedHammersmith Hospital: Ask the CML Expert
by David Fitz (Dec 17)

Details of a fantastic new service Hammersmith Hospital in London are offering to all CML patients and doctors. A chance to engage with experts.
Category: Uncategorised

Replies: 0

Last updated: 14 January 2022
Pojo on 26 June 2022

Category: Side effects

Replies: 4

Last updated: 27 June 2022

Peanut Butter stool on Tasigna
by Pojo (Jun 27)

Ok I will give it a try. Thanks. I’ll let you know how it works.

by snowman 35 (Jun 27)

Eg eat your breakfast at 8 in the morning take your pill at 12 in noon after 1 hour I think you can eat your lunch .Then you can eat your dinner at about 9:30 and take your pill at 12 in midnight.I

by Pojo (Jun 27)

Is the logic behind those times maybe to eat breakfast early around 7 or 8am. Skip lunch and then eat dinner perhaps around 5 or 6pm. So take the pill when there is little food in the system. This

by snowman 35 (Jun 27)

You could try change the time you take the pill.e.g 12 at noon and 12 at midnight...
Category: Side effects

Replies: 4

Last updated: 27 June 2022
grilledcheesesamich on 23 June 2022

Category: Treating CML

Replies: 3

Last updated: 26 June 2022

It's been almost two years and still not in CMR range.
by Pojo (Jun 26)

I was on Imatinib for almost 11 years and never achieved CMR. My doctor wanted to switch me to nilotinib years ago but I thought, in error now when I look back, that I will always have to take a

by wshi2001 (Jun 26)

hi, I was in the same situation that I need to have antacid everyday. But it does not seem to affect the efficacy of the drug. I have experimented taking Tasigna with and without the

by Nimbus2 (Jun 25)

It took me sometime to find a good regime. After much experimentation, I take 100mg of dasatinib immediately before going to bed (say 22:00). I take 30 mg of lansoprazole at 09:00 with a shot of

by grilledcheesesamich (Jun 23)

Hello,
I'm just curious of others experiences in taking time to get to complete molecular response. In all the information they gave me two years ago (age 35), it seemed like I
Category: Treating CML

Replies: 3

Last updated: 26 June 2022
snowman 35 on 25 June 2022

Category: Blood tests

Replies: 6

Last updated: 26 June 2022

Creatinine levels
by snowman 35 (Jun 26)

By drinking more water levels went down!sometimes close to normal range sometimes higher(mostly in hot days)but definitely lower than if was drinking less....

by snowman 35 (Jun 26)

I am not on imadinib....all the tests and the ultrasound was perfectly normal!

by wshi2001 (Jun 26)

By the way, its got nothing to do with drinking more water. My doctor said the same thing, drink more water, I tried, and did not make any difference, it's the drug's side effect.

by wshi2001 (Jun 26)

hi, when I was on Imatinib, I had the same problem. When I changed to Tasigna, it settled down. I read some article suggesting there was cases that imatinib causing kidney damages
Category: Blood tests

Replies: 6

Last updated: 26 June 2022
devenavani on 7 November 2019

Category: Treating CML

Replies: 2

Last updated: 25 June 2022

THC/CBD interaction with Tasigna
by AdrienneBerg (Jun 25)

THC is known mainly for its psychoactive effects, but it also has physical effects. CBD has only a physical effect. That is, it affects the body without changing the state of mind. But we always

by TimJanson (Jan 27)

Observing the effects of CBD and THC on the user, some researchers have continued to mix the two cannabinoids in one product, bridging the gap between CBD and THC and providing additional benefits

by devenavani (Nov 7)

Hello does anybody know if there are any negative interactions with THC/CBD aka cannabis and Tasigna ?
Its widely used by caner patients to help manage nausea /anxiety/ pain etc etc.
i
Category: Treating CML

Replies: 2

Last updated: 25 June 2022
sandy craine on 14 April 2022

Category: Other conditions

Replies: 2

Last updated: 24 June 2022

Geert Vinden Bossche - not the message we want to hear!
by sandy craine (Jun 24)

Have you had a diagnosis of CML?

by scuba (Apr 15)

And, of course, vitamin D:

https://www.cureus.com/articles/93377-vitamin-d-the-missing-nutrient-beh...

Vitamin D supplementation and clinical outcome of COVID-19 patients
The number of deaths

by sandy craine (Apr 14)

Many of us will not want to hear this, but I think it's important to at least listen to what this guy is saying. It is complex information, but stick with it. We are not done with this pandemic
Category: Other conditions

Replies: 2

Last updated: 24 June 2022
Kamil on 23 June 2022

Category: Uncategorised

Replies: 0

Last updated: 23 June 2022

Albumin serum elevated
by Kamil (Jun 23)

Hi,
I hope everyone is doing well.
we just received our latest results everything is well , everything is within the normal ranges. Platelets had somewhat stabilised, haemoglobin was slightly going
Category: Uncategorised

Replies: 0

Last updated: 23 June 2022
MartinZA on 23 June 2022

Category: Treating CML

Replies: 1

Last updated: 23 June 2022

Is dose reduction possible on imatinib?
by AlastairC (Jun 23)

Hi Martin, simple answer is yes.
There a long thread on this here
In summary after many years on 400mg imatinib, I reduced to 200mg for year and maintained MMR. I stopped taking the pills and was in

by MartinZA (Jun 23)

Hello everyone!
I've recently read many posts and stories about people who have successfully reduced their dosage of dasatinib, and if I'm not mistaken there are several people here on this
Category: Treating CML

Replies: 1

Last updated: 23 June 2022
AlastairC on 6 October 2017

Category: Treating CML

Replies: 145

Last updated: 23 June 2022

Imatinib Dose Reduction Starts
by AlastairC (Jun 23)

Apologies for not keeping his up to date - the last 2 BCRABLs have been zero - still on 200mg imatinb.

by Ray Sell (Oct 13)

That is really great news. Congrats. It's so exciting to hear of dosage reductions and people getting off these drugs. Gives us hope. Ray

by AlastairC (Oct 13)

After some issues getting a valid BCRABL (described on another thread), based on another 0.000 my consultant has today agreed to reduce my imatinib dose to 200mg. I am confident that I will

by AlastairC (Jul 7)

My consultant has agreed that I can return to 200 mg of imatinib. Before I do that he wants another BCR-ABL test, and for us both to confirm the result before I make the change. So bloods next week
Category: Treating CML

Replies: 145

Last updated: 23 June 2022
Vijay Kumar Verma on 24 May 2022

Category: Uncategorised

Replies: 4

Last updated: 23 June 2022

Gallbladder removed
by Vijay Kumar Verma (Jun 23)

Life is better now.

by DavidS (Jun 7)

Hi… also had mine removed about 8 years ago now, keyhole and in and out in a day. Considering the pain I went through when the stones played up I was very happy to get it sorted… you

by Vijay Kumar Verma (May 26)

Thanks a lot

by Christine R (May 25)

Had mine removed 20 years ago and it was the easiest operation i have had. Mine was keyhole and recovery was quick. I have never had a problem since but other people have. This was a few years
Category: Uncategorised

Replies: 4

Last updated: 23 June 2022
Vijay Kumar Verma on 24 May 2022

Category: Uncategorised

Replies: 2

Last updated: 23 June 2022

Gallbladder removed
by Vijay Kumar Verma (Jun 23)

I'm 36 years old.

Life is better after gallbladder removal.

Liver will adjust according to the needs.

Do I need to adjust my fat intake or my body will adjust?

by Richard (Jun 22)

I had my gall-bladder removed at the ripe old age of 23, which was 50 years ago. I can honestly say that it made no difference whatsoever to my life. I have developed a blood condition of LOW lipids

by Vijay Kumar Verma (May 24)

Today I get my gallbladder removed due to stone and unbearable pain.

Any input from our fellow cmlers will appreciated from the bottom of my heart about future complications.

Wishing you
Category: Uncategorised

Replies: 2

Last updated: 23 June 2022
hannibellemo on 8 June 2022

Category: Uncategorised

Replies: 7

Last updated: 23 June 2022

Peripheral Neuropathy on Tasigna - Redux
by Pojo (Jun 23)

I went to see my PCP today and she doesn’t think it’s gout. I think it’s the TKI. I’m on 800 mg of Tas. But I think my toe lifts at the end of my workout routine is helping.

by hannibellemo (Jun 21)

Pojo, I read an earlier post of yours about maybe having gout. There appear to be several ways to diagnose gout from examing the joint fluid, blood test for uric acid level to imaging. Good luck!

by Pojo (Jun 19)

Yes I got cramping with imatinib and nilotinib. I find over exertion say with weights or too many reps at the gym can cause cramping for me. Magnesium is a lightweight sort of slippery metal. I have

by EvaH (Jun 19)

I don't know if it was neuropathy but i got weird cramps in me first year of tkis , a mix of imatanib and nilotanib.
Magnesium helps cramps and light weight training helped a lot with the cramps.
Category: Uncategorised

Replies: 7

Last updated: 23 June 2022
mamodei on 15 March 2022

Category: Side effects

Replies: 6

Last updated: 22 June 2022

Muscle pain on Sprycel?
by vikkibendell (Jun 22)

One of the most important things for any athlete is to take care of their health. When you are an athlete, it means that your body is your number one tool for success. One of the common issues that

by Sherley (May 4)

Hi. I have muscle pain all the time in one leg. I will definitely try the magnesium too.

by mamodei (May 3)

A combination of drinking more, and using magnesium oil when needed, has helped get this muscle pain under control. I take magnesium orally as well.

by sandy craine (Mar 16)

Hi Maria,
You may be suffering from myofascial pain syndrome... see here
I have recently suffered very similar issues with muscle and joint pain. I have found several things that have helped:
Category: Side effects

Replies: 6

Last updated: 22 June 2022
No_Fun_2022 on 17 June 2022

Category: Treating CML

Replies: 12

Last updated: 22 June 2022

BCR-ABL went up at 6 weeks worried
by Kamil (Jun 22)

Thats good news, means you were detected very early. Again, dont worry about the latest bcr result, wait for the 3 month check up and then see how it goes.
Do you know what your Vitamin D levels

by No_Fun_2022 (Jun 21)

My blast was 0.5% at diagnosis when checked during the bone marrow biopsy. In the peripheral blood I don't think they found any..
I just asked to do a PCR at 6 weeks because I wanted to get an

by ColoradoGuy (Jun 21)

If I am understanding your post correctly you have been on TKI for about six weeks. It is worth waiting a month or two to see if you get it moving downwards. I was too started on 100mg

by Kamil (Jun 21)

Hi,
its such a small difference that I wouldn’t worry too much about, it can depend on how many cells were tested and many other factors… Firstly, the tki’s are working as
Category: Treating CML

Replies: 12

Last updated: 22 June 2022
SueAngel on 22 June 2022

Category: Side effects

Replies: 0

Last updated: 22 June 2022

Sprycel & Cycle
by SueAngel (Jun 22)

Hi,
I was diagnosed over a year now and been on Sprycel. Started at 100 mg and later went to 50. I am 38. Since starting Sprycel I have noticed that my menstrual cycle changed significantly.
Category: Side effects

Replies: 0

Last updated: 22 June 2022
Lisa70 on 10 June 2022

Category: Uncategorised

Replies: 5

Last updated: 22 June 2022

Newly Diagnosed
by onekayaker (Jun 22)

Hi Lisa...Patient at MD Anderson, DX june 2018 with random bloodwork & wbc 48k. Was eased into Bosulif 100mg....200mg then 300mg in 2 week increments. Never put on the recommended 400mg

by SueAngel (Jun 18)

Hi Lisa,
As someone already mentioned this is a great forum. I strongly encourage you to take advantage of all the support that’s out there ... I know I did and it truly made a difference. I

by Kamil (Jun 10)

Hi Lisa,
This is a great forum, with many knowledgeable and experienced people :) I hope you react well to your TKI and achieve great results. Be careful when doing your research as many information

by Lisa70 (Jun 10)

Thank you Kirk
Category: Uncategorised

Replies: 5

Last updated: 22 June 2022
Poppy Darling on 20 June 2022

Category: Treating CML

Replies: 4

Last updated: 21 June 2022

Oedema on Imatinib
by Poppy Darling (Jun 21)

Hi,
Yes, bloods have reduced from that amount to 4.8! All good.

PD

by EvaH (Jun 21)

Yes i understand.
I meant that the eye odema is a cosmetic side effect of the TKI, its not dangerous nor will it impact your health or eye function in any way.
Im not sure of which scale your doc

by Poppy Darling (Jun 20)

Hi Thanks for this. It’s isn’t cosmetic, it’s a side effect of the drug. My bloods have reduced from 50 to 4.8, so they’re working, which is good!

by EvaH (Jun 20)

The under eye stuff is pretty common on imatanib and probably for other tkis too
Its very early days at 4 weeks, wait till you have hematologial response at least, maybe even MMR before thinking
Category: Treating CML

Replies: 4

Last updated: 21 June 2022
Kamil on 20 June 2022

Category: Treating CML

Replies: 4

Last updated: 21 June 2022

Alcohol and question about platelets
by Kamil (Jun 21)

We are also into nutrition and supplementation and believe that the appropriate nutrition can help with the side effects of the drug and perhaps enhance its effectiveness. We both take

by scuba (Jun 20)

As long as she tolerates Curcumin (i.e. nosebleeds), I am a strong supporter of Curcumin's health benefits (and Selenium) in messing with CML.
There is no doubt, in my mind, she will beat CML.

by Kamil (Jun 20)

Thanks for your reply Scuba, as always very informative. We had our consultation Today and her results are great :) the wbc had actually stabilised and are hovering between 8.7-9.2, platelets

by scuba (Jun 20)

It's quite normal for platelets to drop especially when starting out high during early treatment. Dasatinib is a potent myelosuppression agent, so it is important to monitor blood levels (
Category: Treating CML

Replies: 4

Last updated: 21 June 2022
vonnie on 11 June 2022

Category: Uncategorised

Replies: 4

Last updated: 20 June 2022

Diarrhea
by vonnie (Jun 20)

Thanks very much for your reply
Vonnie

by Crfharris (Jun 20)

I have found that taking a probiotic daily has made a huge difference with fewer bouts of diarrhea. When I do have it, Imodium works for me.
Good luck!

by vonnie (Jun 13)

Thank you again John for your prompt reply I will give this advice consideration
Vonnie

by johnw1001 (Jun 13)

I was advised to use Normacol which is a regulariser of the digestive/colon system and helps to form more regular stools-sprinkle a sachet or two on cereal in the mornings.An alternative natural
Category: Uncategorised

Replies: 4

Last updated: 20 June 2022