CML Horizons 2024 Videos and Presentations

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

Daphne Lynn on 4 December 2018

Category: Treating CML

Replies: 2

Last updated: 5 December 2018

Two years into treatment and needing advice
by RC Kirk (Dec 5)

Daphne, I also agree with starting on lower dose of dasatinib. When I was taking 100mg/day, it made my heart skip a beat sometimes and I didn't like it at all.
Your PCR scores have

by scuba (Dec 5)

Daphne,
It is good for you to switch off nilotinib given your atrial fibrillation history. Switching to dasatinib will have less of an effect in that regard. And I strongly agree with you on

by Daphne Lynn (Dec 4)

I am now nearing two years since diagnosis and although I feel well my consultant is disappointed with my results and pushing me to change to Dasatinib which would be my third TKI
My brief
Category: Treating CML

Replies: 2

Last updated: 5 December 2018
Mona Gard on 1 December 2018

Category: Uncategorised

Replies: 5

Last updated: 2 December 2018

Good results
by Mona Gard (Dec 2)

OMG, the head itching was the worst. I went to Er, dermatologist and family dr over it. I was even hoping I had lice. Lol. Bumps and itching. Thank god tho, that has stopped. Been on gleevec for 3

by fiona vaughan (Dec 2)

Funny you mention the stomach muscles Mona. I have gone to bed very early tonight because of stomach pains which have been increasing since taking the Nilotinib over the last month. I’m having

by alexmcpee (Dec 2)

You’re welcome! Yeah you’ve got no worries at that level!!
Yes you were defo caught early I was 330wbc at DX in March and a “Enourmous” spleen 30 times it’s normal size

by Mona Gard (Dec 2)

Aw thanks alex. From reading some of these post, I think mine was caught very early. My wbc was 18,000 at time of diagnosis. I am happy and less scared now.
Category: Uncategorised

Replies: 5

Last updated: 2 December 2018
ckquinn on 1 December 2018

Category: Uncategorised

Replies: 2

Last updated: 1 December 2018

Major surgery
by ckquinn (Dec 1)

Thanks David that's reassuring, hope you are well.
Kate

by David Fitz (Dec 1)

Hi.
I had fairly major abdominal surgery when on dasatinib which involved a general anaesthetic. I had a good chat to my haematologist and also the anaesthetist about it all, and it was pretty

by ckquinn (Dec 1)

I need to have major surgery soon for spinal cord compression, not clear of cause as yet.

Has anyone else had surgery while on Dasatinib, and if so was there any blood problems during/after.
Category: Uncategorised

Replies: 2

Last updated: 1 December 2018
Karinne on 26 March 2018

Category: Uncategorised

Replies: 6

Last updated: 1 December 2018

Half dose of Tasigna
by RC Kirk (Dec 1)

It's my understanding that food (especially fatty food) increases uptake of TKIs. If I remember correctly, taking Sprycel with a meal increases uptake an average of 14%. I'm

by cmljax (Dec 1)

Perhaps not, but I don't eat in the morning anyway, so I still abide by the fasting rules by default. Also, I don't want anything in my stomach messing with uptake or in any way

by RC Kirk (Nov 30)

Perhaps fasting isn't necessary on reduced dose?
Conclusion
Using nilotinib at a reduced dose of 200 mg BID under fed conditions in patients with chronic phase CML seems feasible and safe.

by cmljax (Mar 29)

Hi Karinne:
I started on full dose (600 mg/day) Tasigna at Dx in Oct 2016. Due to multiple side effects and good response, I have reduced my dose 3 times - first to 450 mg/day in March 2017,
Category: Uncategorised

Replies: 6

Last updated: 1 December 2018
HKBails on 1 December 2018

Category: Treating CML

Replies: 1

Last updated: 1 December 2018

Hair loss
by AlastairC (Dec 1)

Thanks for this; not sure if this helps but you have struck a chord. I was on 400mg imatinib for 10+ years, reduced to 200mg least year maintained MMR, and stopped about 7 weeks ago. My hairline had

by HKBails (Dec 1)

Hi I’ve been on Imatinib for a month now and have found my hair is really thinning. Right at the front and back of my head. I have 2 patches with very little hair. It is not as obvious to
Category: Treating CML

Replies: 1

Last updated: 1 December 2018
David83 on 30 November 2018

Category: Uncategorised

Replies: 6

Last updated: 1 December 2018

Any advice welcome
by David83 (Dec 1)

Hi Poppert, thanks for your story. It’s very encouraging to hear when someone has been through something similar and there is a positive outcome.
I suppose that does make sense that the new

by David83 (Dec 1)

Kat - I will have a look at the forum in the US as well, thanks for the info. I knew the road would be a rocky one and so far I’ve stayed positive throughout even with less than ideal results

by Poppert (Nov 30)

I’ve had problems with low thrombocytes. Dx in jan, put on Imatinib, platlets at 134. Platlets dropped to 28 in just over three weeks. Paus imatinib for two weeks, platlets were 22 at lowest.

by kat73 (Nov 30)

Yes, you'd be quite welcome across the pond! It's lls.org and then you find the CML forum and go from there to register. Tell Melanie Kat sent you! I think she has done
Category: Uncategorised

Replies: 6

Last updated: 1 December 2018
BrittBratt95 on 25 November 2018

Category: Organising your life

Replies: 7

Last updated: 30 November 2018

Newly diagnosed...
by cmljax (Nov 30)

We are all scared int he beginning and I'm pretty sure we are all scared leading up to each and every PCR test, except Scuba maybe surprise. I am now 26 months post Dx and on 150mg/day Tasigna

by DawnD (Nov 29)

Scuba, I always love your responses. You always help me even tho it was addressed for someone else!!!!😊

by scuba (Nov 29)

BrittBratt95 wrote,
"But I need help with the mental battle.... ANY TIPS !?"
Yes,
First - you will never die from CML - ever. You will die from something else - hopefully old age.
Second

by DawnD (Nov 29)

Hello, This is a great site for support. We do know and feel what you are going through. I was diagnosed around 3 months ago. Tolerating the sprycel fairly well. I find staying active and exercise
Category: Organising your life

Replies: 7

Last updated: 30 November 2018
AF on 22 November 2018

Category: Uncategorised

Replies: 6

Last updated: 28 November 2018

Please help my husband....
by Isla D (Nov 28)

Good luck to you and your husband. I hope he gets some relief.
Keep us updated.

by RC Kirk (Nov 28)

Imatinib might be a good option to talk about. It generally seems to have less worrisome side effects than some of the other TKIs.

by AF (Nov 27)

He had a CT scan which showed intestinal telescoping in 3 spots. For further diagnosis we just did a MRI but it came back completely normal (no signs of telescoping or organ damage) however a stool

by Isla D (Nov 27)

Hi there
I’ve had CML since April 2016 and have been on Sprycel since this time. Initially full dose and after about six months tapered down to 50mg per day.
I have had moderate
Category: Uncategorised

Replies: 6

Last updated: 28 November 2018
AF on 26 November 2018

Category: Blood tests

Replies: 3

Last updated: 27 November 2018

TKI Blood Levels for Dosage Adjustment
by AF (Nov 27)

Will do - thanks very much for both of your responses.

by AlastairC (Nov 27)

Through my job at the time managing some teams of toxicologists I became aware of work under Prof Bob Flanagan at Kings in London whose team have developed modern methods of measuring plasma levels

by RC Kirk (Nov 26)

I was seeing a doc at a research hospital for a time. He ordered an imatinib plasma level test because I had lowered my Gleevec dose to 200 mg/day. If I remember correctly, the result

by AF (Nov 26)

Has anyone had experience with testing for TKI levels in their bloodstream to help optimize dosage? They don’t perform these types of tests in the UAE but we will travel abroad if anyone can
Category: Blood tests

Replies: 3

Last updated: 27 November 2018
fiona vaughan on 25 November 2018

Category: Uncategorised

Replies: 6

Last updated: 26 November 2018

So happy today
by RC Kirk (Nov 26)

David, I can see the picture in the post above, but can't see the picture in my post from a few days ago.
Thanks for working on this.
Kirk

by David Fitz (Nov 26)

Pictures don't seem to work quite yet. I'm working on it!
David.

by Nimbus2 (Nov 26)

Thank you, Rosiem. My contention is that this is down to decline in muscle mass and strength as you observe. It could possibly be explained by ageing in my case but the decline seems to have been

by Rosiem (Nov 25)

I seem to remember in one of the videos from the CMLSUPPORT day that a speaker mentioned research as yet unpublished on muscle biopsies of cml patients showing decline in muscle mass and strength.
Category: Uncategorised

Replies: 6

Last updated: 26 November 2018
DawnD on 21 November 2018

Category: Children & young people

Replies: 14

Last updated: 26 November 2018

Fish suggests remission
by DawnD (Nov 26)

Thanks Nimbus, So very much to learn and process!! Eventually it will all sink in:) Good luck with your journey.

by Nimbus2 (Nov 24)

I am not doing quite as well as you, Dawn. At 12 weeks, my FISH is 17% against a requirement of less than 35%.
My PCR is 15% against a target of less than 10%. But my consultant is unconcerned

by DawnD (Nov 24)

Thank you Scuba, your info is always great and I appreciate it so much. I am beginning to look around. Just not happy with her knowledge. Thanks again

by scuba (Nov 23)

FISH and PCR are very different tests. FISH looks at cells under the microscope and is very prognostic regarding disease progression potential.
Achieving FISH = zero in 3 months is excellent
Category: Children & young people

Replies: 14

Last updated: 26 November 2018
Mona Gard on 24 November 2018

Category: Uncategorised

Replies: 6

Last updated: 26 November 2018

Nervous
by RC Kirk (Nov 26)

Hi Mona, I don't know if this would help you, but it might. I like to get a copy of all my test reports so I can take a look at them at leisure. It helps me understand what

by Mona Gard (Nov 24)

Exactly. I know I should be more informed on this. Everyone talks about their counts,platelets,"fish" results and I'm like "what"? Maybe still in shock a little? Ill get with the program soon. Lol

by SC (Nov 24)

Hi, Just to say that I feel exactly the same. I got confirmed diagnosis just under 3 weeks ago. Had gone to A&E for a 2nd time for what I thought was "lower back pain" and the next day

by Alaina (Nov 24)

Hi Mona,
I'm only 2.5 years into treatment and I still get so nervous 2 weeks leading up to my next remission test. Every new ache or weird side effect makes me paranoid. Is this a side effect? Is
Category: Uncategorised

Replies: 6

Last updated: 26 November 2018
SC on 25 November 2018

Category: Other conditions

Replies: 1

Last updated: 25 November 2018

CML & Osteoarthritis
by Gitel (Nov 25)

For me, the osteoarthritis is as it always was. However, I cannot take any NSAID to control pain and inflammation. I have, to my amazement learned to live with it with small amounts of Tylenol, and

by SC (Nov 25)

Recently diagnosed with CML, I also have osteoarthritis. Had a right knee replacement about 8 years ago and on the list for a left one. Does anyone know what effect, if any, CML has on
Category: Other conditions

Replies: 1

Last updated: 25 November 2018
MJP on 22 August 2018

Category: Blood tests

Replies: 5

Last updated: 25 November 2018

A bit confused with recent FISH result
by scuba (Nov 25)

The number 9 and number 22 chromosome are packed next to each other very tightly right at the bcr and abl breakpoints. Translocating these genes is very easy and most certainly happens all of

by Nimbus2 (Nov 24)

Thank you, Scuba, for your explanation provided above. I found this using the search tool. Incidentally, the search tool provided on this site is excellent.
I have re-read your posting about 10

by MJP (Aug 23)

Thank you.

by scuba (Aug 22)

MJP -
FISH is the most important measure and prognosticator of success in CML treatment. FISH counts actual CML cells under the microscope and is expressed as a percentage of normal cells. At
Category: Blood tests

Replies: 5

Last updated: 25 November 2018
Tanya Cuffe on 23 November 2018

Category: Uncategorised

Replies: 2

Last updated: 23 November 2018

Supplements on treatment
by Tanya Cuffe (Nov 23)

Yes thanks Alex hope yr trtmnt is going well

by alexmcpee (Nov 23)

Hi there
My Oncologist said don’t waste your time or money as they don’t do anything.
Many on here suggest taking Magnesium, Circumin, Vit D and high dose C.
Ive just ordered some Circumin and will

by Tanya Cuffe (Nov 23)

Would like to know what majority of people take supplements alongside treatment,and what supplements are essential.Have heard Vitamin D is s must,alongside magnesium supplentation.Am now adding Cod
Category: Uncategorised

Replies: 2

Last updated: 23 November 2018
RC Kirk on 22 November 2018

Category: Uncategorised

Replies: 4

Last updated: 24 November 2018

Is there a way to post pictures?
by RC Kirk (Nov 23)

Thanks David. I knew you'd have an idea!
Kirk

by David Fitz (Nov 23)

You ought to be able to ... let me look into it and I will post instructions.
David

by Nimbus2 (Nov 23)

Yes, I had the same thought. How did he do it?

by Alaina (Nov 23)

Wish I could help. I can't even get a profile picture to upload.
Category: Uncategorised

Replies: 4

Last updated: 24 November 2018
alexmcpee on 22 November 2018

Category: Uncategorised

Replies: 2

Last updated: 22 November 2018

Mobile CML app
by alexmcpee (Nov 22)

Hi Kirk
Thats a really good idea! I like it.
I’ll add that to the list once I’ve accumulated enough feedback.
Glad that you think it’s a good idea. Once I’ve made the iOS one and it’s used I’ll

by RC Kirk (Nov 22)

Hi Alex,
This sounds like a cool idea! My first thought about the PCR graph is that it would be great to have some sort of analysis done that would give feedback to the user if the trend was

by alexmcpee (Nov 22)

Hi guys
I am a mobile software developer with CML I am thinking of developing a free app initially for iOS. Maybe with non intrusive ads so that I can make a little money and also donate some to
Category: Uncategorised

Replies: 2

Last updated: 22 November 2018
alexmcpee on 20 November 2018

Category: Uncategorised

Replies: 7

Last updated: 22 November 2018

Magnesium and Circumin
by Alaina (Nov 22)

Absolutely. You'll find a lot of experts on this site. And I'm sure everyone here understands and feels much the same. Since we are on the same medication I can email you a few side effects I've

by alexmcpee (Nov 22)

Hi Alaina
I am so grateful for your reply. Many thanks for taking the time to do so. This is all very new to me so getting pains and weird sensations isn’t the norm for me and I am guessing over

by Alaina (Nov 21)

Hey Alex,
I understand and am glad I'm not the only one either...I get numbness and tingling but it is intermittent (so far). This week it's my left thumb that feels the tingling. But I've

by alexmcpee (Nov 21)

Hi Alaina
Many thanks for your reply. In a selfish way glad I am not the only one. The pain is rather odd and it’s consistent I keep waking up expecting the pain in shoulder and arm and numbness in
Category: Uncategorised

Replies: 7

Last updated: 22 November 2018
Antje on 19 November 2018

Category: Getting help

Replies: 6

Last updated: 21 November 2018

Infections and antibiotics
by AlastairC (Nov 21)

Discussion with links about echinacea/TKI interaction on this (now quite old) thread
Echinacea also listed here as interacting with imatinib.
Alastair

by CCLilly (Nov 21)

I had heard of avoiding grapefruit and St. John's Wort but not Echinacea. Can you provide a link please? I've always used homemade Elderberry Elixer for colds but maybe I should double check all my

by Poppert (Nov 19)

I'm also considering vaccinate against the flu this year for the first time ever.
My WBC and neutrophils has been a bit low ever since diagnosis in January so I'm careful to wash hands, don't

by AlastairC (Nov 19)

I agree about the handwashing other hygiene methods to reduce the risk. One thing what is not open to users of TKIs is echinacea. I used it pre-diagnosis to ward off colds etc. during the winter and
Category: Getting help

Replies: 6

Last updated: 21 November 2018
HKBails on 18 November 2018

Category: Treating CML

Replies: 8

Last updated: 20 November 2018

Biopsies
by David Fitz (Nov 20)

In the UK, it's a job quite often given to a SHO (senior house officer) so they can get experience. So people's experiences can vary quite a lot if it's someone who hasn't done it many many times.

by Gitel (Nov 20)

There has been discussion of BMB on this website over the year. Many fear it, others say no problem. Rereading this set of posts I wonder if the techniques used in the United States might differ

by HKBails (Nov 19)

Thank you all, helpful to know. I will look into getting a more experienced person as clearly based on the time taken and the fact I am still in discomfort 3 weeks on it must not have been done well

by David Fitz (Nov 19)

All medical procedures have some risk. A general anaesthetic certainly does, and it would in most cases seem disproportionate risk for a BMB.
Personally, I found a tooth extraction more painful than
Category: Treating CML

Replies: 8

Last updated: 20 November 2018