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

mil on 29 September 2021

Category: Uncategorised

Replies: 7

Last updated: 12 October 2021

advice
by mil (Oct 12)

Hi Sandy,
Sorry for replying late; yes, i can identify “the days”, it’s usually when i eat kind of “greasy food” like fries or wings, and sometimes also when the

by sandy craine (Oct 1)

Hi Mil,
if you forget to take or vomit after taking it, I think the general advice is to wait until the next day. Can you identify why on certain days you cannot tolerate imatinib?
I used to take

by mil (Oct 1)

Thank you so much for all your recommendations guys. I really appreciate them. Yes, I do take imatinib with plenty of water and i usually tolerate it well, but there are some days that i just can

by Ismo (Sep 30)

Take after a meal with glass of water and don't lie down for half an hour. I had exactly the same problem in my first few weeks of imatinib on the daily 400 tablet eventually eased off a
Category: Uncategorised

Replies: 7

Last updated: 12 October 2021
SS86 on 8 October 2021

Category: Side effects

Replies: 8

Last updated: 12 October 2021

Change of Drug advised ! Scuba, David, John Seek your guidance
by SS86 (Oct 12)

Thank you, Scuba. This is helpful

by scuba (Oct 11)

Dasatinib is an Src inhibitor which can trigger neutrophilic dermatoses.
See the pictures in the article below. If your wife's look similar, it's distinctly possible this is what is

by SS86 (Oct 10)

Thank you, David. The reaction wasn’t like the Stephen -Johnson (hopefully) . The doctor who has recommended us a reduced dose is saying that the body should be able to take 50 mg while the

by David Fitz (Oct 9)

There is not much detail to go on, but if the reaction is something like Stephen-Johnson syndrome, then it’s not to be messed with and reintroducing the drug could cause problems. If the
Category: Side effects

Replies: 8

Last updated: 12 October 2021
ishb1 on 7 October 2021

Category: Uncategorised

Replies: 8

Last updated: 10 October 2021

Nilontinib
by Christine R (Oct 10)

I would agree that there is no point taking more than is needed and i believe the recommendation on dosage of Nilotinib was reduced from 400mg twice a day to 300mg twice a day some years ago. i also

by Buzzm1 (Oct 10)

Christine R, the longer you take a high TKI dosage, the greater the probability of suffering TKI induced side-effects; some of which may be permanent. It makes absolutely no sense to take more

by Christine R (Oct 9)

I noticed a few posts about long term use causing problems but when i did an online search i can't find any scientific research to this effect. My haematoligist is of the opinion that unless there

by Buzzm1 (Oct 9)

Naj, I can't help but ask, after almost five years I would think you should be on a greatly reduced Nilotinib dosage? Many CML patients, if not most, take far more TKI than they need.
Category: Uncategorised

Replies: 8

Last updated: 10 October 2021
AlastairC on 21 September 2021

Category: Blood tests

Replies: 9

Last updated: 9 October 2021

Larger sample required for BCR-ABL?
by David Fitz (Oct 9)

Just reporting back from Bart’s, where I was on Friday. Just a single lavender (I don’t know why they aren’t just called purple!) for the BCR-Abl PCR test. Of course that’s

by nicolaclubb (Oct 8)

At my local hospital I have alway had 5 ‘purple top’ vials taken for my BCR which get put into a separate bag to be sent to Kings. When Iv had my BCR taken at kings it’s also been

by Felix (Oct 4)

Hi, Alastair ,had my bloods done today and nobody knew about any changes in quantity of sample for BCR ABL.They rang thru to someone to check ,not sure if they actually rang Liverpool tho and the

by chrissie (Sep 28)

I see different phlebotomists most times at my GP surgery and they take out the EDTA files and fill at least 2 sometimes 3 for the BCR ABL in the belief that the more the better. I am the only
Category: Blood tests

Replies: 9

Last updated: 9 October 2021
Nimbus2 on 8 October 2021

Category: Uncategorised

Replies: 3

Last updated: 9 October 2021

State of the body
by Nimbus2 (Oct 9)

I do not know whether melanin is a measurable thing. My optometrist did observe that my melanin is unusually low. I protect myself very carefully from the sun. I take vitamins D3 and vitamin K2.

by Nimbus2 (Oct 9)

Thank you, Kat, for your posting. It is indeed very interesting and very helpful.
My problem is "fatigue" which I would describe as being more physical than mental.
I started to lose my

by kat73 (Oct 8)

Nimbus - Excellent questions. My onc always told me, "It's the TKI, not the CML" whenever I complained of anything, especially fatigue. On that, he also said, "ALL my CML

by Nimbus2 (Oct 8)

If a person has been diagnosed with CML but subsequently achieves a sustained MMR, putting TKI damage aside will that person's body have been permanently damaged in any way by the leukaemia?
Category: Uncategorised

Replies: 3

Last updated: 9 October 2021
cmljax on 3 October 2021

Category: Side effects

Replies: 3

Last updated: 9 October 2021

Dry Mouth and dry eyes and intermittent fatigue on 20 MG Sprycel
by cmljax (Oct 9)

Thanks Buzz. I will be discussing further dose reduction with my oncologist after my next PCR in December

by Buzzm1 (Oct 9)

cmljax, in all likelihood you can successfully lower your Sprycel 20mg dosage, first by skipping every fourth day (equivalent to Sprycel 15mg), proceeding to 20mg every other day (10mg). A

by kat73 (Oct 8)

Yes, I also am on 20 mg Sprycel and I get the fatigue (intermittent) and the dry mouth and eyes. No swollen salivary glands. I don't know why, but I tend to not blame the dry mouth and

by cmljax (Oct 3)

Anybody have these sympromes on 20 mg Sprycel? I have been on this dose for about a year now after switching from Tasigna 150MG. I was on higher doses of Tasigna and had very bad dry
Category: Side effects

Replies: 3

Last updated: 9 October 2021
acspeakman on 6 October 2021

Category: Side effects

Replies: 10

Last updated: 8 October 2021

Adjusting (?) to TKI Side Effects
by kat73 (Oct 8)

Would counsel against the full bottle of water. This could go a long way in explaining the nausea. I can't understand your doctor's logic about the expense of imatinib (which is

by acspeakman (Oct 8)

Hi John,
Thanks so much for your post. I think I can answer your questions.Yes I am seeing a CML specialist (at a major hospital in Boston). And yes bosutinib is a slightly odd choice for just

by acspeakman (Oct 8)

Diane, I really appreciate this specific info about bosutinib. Just what I needed. I’m taking 400 at night with dinner. it was titrated quickly up in the first 4 days. It turns out the pill is

by acspeakman (Oct 8)

David, thanks again. I have tried the search engine and it’s great. Very helpful. Also, yes I take my pill with dinner at night and attempt to drink a full bottle of water then. This forum has
Category: Side effects

Replies: 10

Last updated: 8 October 2021
JPD on 5 October 2021

Category: Uncategorised

Replies: 2

Last updated: 8 October 2021

So what about antibodies..?
by scuba (Oct 8)

JPD - Your question is complex. It would take me pages to answer it in sufficient detail. However - it is important to note that antibodies alone are not how our bodies defend against foreign

by JPD (Oct 8)

Well... I guess Ill answer myself :-)
Talked to my GP and she said the CDC has not said its necessary for CML patients to get their antibody levels checked - but she'll check it if I want

by JPD (Oct 5)

Has anyone heard declaratively that CML patients are not producing adequate antibodies? And, if so, if the CML is (mostly) gone why arent our bodies producing antibodies?
Should we all be
Category: Uncategorised

Replies: 2

Last updated: 8 October 2021
David Fitz on 4 October 2021

Category: Uncategorised

Replies: 3

Last updated: 7 October 2021

Global Leukemia Patient Experience Survey 2021
by jonnie turpie (Oct 7)

Yes Very frustrating. Can the team behind th esurvey help ps.

Thanks

by MarkP66 (Oct 5)

Hi. It’s the same for me after 100 questions ! Have tried all the usual tricks with post code spaces and telephone prefix etc but it won’t submit ! If anyone has a fix let me

by jonnie turpie (Oct 4)

Hi I have completed the survey but when i try to submit I get the errors:
'Please complete all questions before submitting the survey.
The following questions are missing:
139. Name is not valid

by David Fitz (Oct 4)

A collaborative effort of patient organisations around the world through the Acute Leukemia Advocates Network, CLL Advocates Network and CML Advocates Network are aiming to build a global picture of
Category: Uncategorised

Replies: 3

Last updated: 7 October 2021
vonnie on 3 October 2021

Category: Uncategorised

Replies: 5

Last updated: 7 October 2021

Diarrhoea
by David787 (Oct 7)

Hello John
A most useful, detailed and informative post, as usual!
I can identify with all the “faecal looseness” symptoms. I have always had a little looseness, strangely when I started

by vonnie (Oct 5)

Thank you John for your very informative reply it seems it is a condition I have to accept.
Cheers Vonnie

by johnw1001 (Oct 5)

Hi All,
I was going to post something on the gastro- intestinal issues in terms of tki medication and in particular that related to imatinib in terms of common side effects but will respond here.

by vonnie (Oct 3)

Thanks Denise that is the next plan I have to take the Imatinib in the evening. Thanks again for your support.
Vonnie
Category: Uncategorised

Replies: 5

Last updated: 7 October 2021
scuba on 28 September 2021

Category: Uncategorised

Replies: 6

Last updated: 6 October 2021

Quercetin anyone?
by Nimbus2 (Oct 6)

I almost had my head bitten off when I mentioned autopathy and flavonoids at a CML forum.
But I see now reference to the autopathy inhibitor coded MRT403 deploying the UKL1 pathway. Perhaps a

by scuba (Sep 29)

I tend to take it every day.

https://www.joewongcomedy.com/guidelines/how-often-should-you-take-a-que...

by Lucky (Sep 28)

Hi, Scuba,
should we take quercetin constantly or it is necessary to stop for some period of time and then to take it again?
Thank you!

by scuba (Sep 28)

Hi Denise,
I was the same way. Some people need to take it with food, some on an empty stomach. I don't take it all of the time, just most of the time when I am home and not traveling. I did
Category: Uncategorised

Replies: 6

Last updated: 6 October 2021
johnw1001 on 28 September 2021

Category: Organising your life

Replies: 13

Last updated: 6 October 2021

Flu jab in UK
by Patch (Oct 6)

Hi Michelle,

I'm so glad you have got the booster booked in.
Keep safe everyone
Yvonne

by michelle (Oct 6)

Thank you All!
I have managed to book the booster but as it’s exactly 6 months and 7 days since my second jab, I assume I’m in the over 50’s booster cohort.
I believe as

by Patch (Oct 5)

Hi Michelle,
Yes, totally agree its such a worry, word is we maybe in the group were we may not have the same protection.

by Patch (Oct 5)

Hi Michelle,
Yes, totally agree its such a worry, word is we maybe in the group were we may not have the same protection.
Category: Organising your life

Replies: 13

Last updated: 6 October 2021
Danmason11 on 2 September 2021

Category: Food & fitness

Replies: 12

Last updated: 5 October 2021

When is best to take Imatinib?
by Patch (Oct 5)

Hi All,
I am very grateful for this site and all the help, advise and support I receive Thank you all..
I'm on 400mg Imatinib 1 daily.
When I was given the first prescription 31st August 2018

by Fatty Fish (Oct 4)

Hi,
I used to take mine in the morning after breakfast but always felt sick when I was moving around etc. I changed to take it in the evening after a light supper ie cornflakes or toast etc then off

by Deni H (Sep 6)

Hi
I've set an alarm on my mobile for the same time every day....just after breakfast. It seems to be working. I saw my consultant last week, on my last blood test it shows my BCR/ABL as 0

by Humberto (Sep 4)

I take my Imatinib in the middle of my lunch (my longest meal of the day). I mean, I start to eat, in the middle, I take the pill, and I continuous eating.
Category: Food & fitness

Replies: 12

Last updated: 5 October 2021
Fatty Fish on 4 October 2021

Category: About CML

Replies: 4

Last updated: 4 October 2021

Introduction
by scuba (Oct 4)

Hi Diane,
Magnesium can be taken any time with or without food although I tend to take it first thing in the morning and just before retiring for the night (200 mg morning/ 200 mg night).
I take my

by Diane CW (Oct 4)

Hi Scuba and Andrew
i was very interested to read about magnesium supplements.
I was also diagnosed in 2017 and have been on Bosutinib for over three years and I feel as though in the last few

by Fatty Fish (Oct 4)

Hi Scuba,
Cool tag, I spent hundreds of hours underwater ;-)
The info you mention regarding the magnesium really makes sense. I checked my medical records and my Magnesium was last tested in April

by scuba (Oct 4)

Hi Andrew,
When I was first diagnosed, I started on Imatinib as you did and shortly afterwards developed the dreaded cramping. But I learned about TKi's (Imatinib mostly) can cause a severe
Category: About CML

Replies: 4

Last updated: 4 October 2021
Justine on 30 September 2021

Category: Treating CML

Replies: 6

Last updated: 1 October 2021

Question for everyone about TFR
by Felix (Oct 1)

Hi Justine ,I was diagnosed in November 2017 ,I am sure if you went on Dasatinib 20 mg you would get to be undetected , it works slightly differently than Imatinib it should mop up your residue so

by Justine (Oct 1)

Thanks John for all that good information. I appreciate it and you!
You and Denise both suggested a lower dose. My doctor is in fact a CML specialist and I will talk with him about this at next

by johnw1001 (Oct 1)

Hi Justine,
In direct response to your question about why we as CML patients would want to go for TFR or even dose reduction then I would have two major reasons.The first is that even though tki

by Felix (Sep 30)

Hi, that's certainly low enough to go on to 20 mg ,I am on that and I feel much better than when I was on Imatinib.I was tired all the time ,had the bad rash and hooded eyes ,all that went
Category: Treating CML

Replies: 6

Last updated: 1 October 2021
sandy craine on 1 October 2021

Category: Treating CML

Replies: 0

Last updated: 1 October 2021

Professor Hughes’ CML publications of the month:
by sandy craine (Oct 1)

https://www.cml-foundation.org/science-education-mobile/341-science-cml-news-publications-2019.html
Category: Treating CML

Replies: 0

Last updated: 1 October 2021
annie63 on 30 September 2021

Category: Side effects

Replies: 2

Last updated: 1 October 2021

Nilotinib - cholesterol any links
by annie63 (Oct 1)

Thank you Will0… this is my gut feeling too.

by WillO (Sep 30)

Hi Annie
Had the same experience with rising cholesterol. Haematologist said this was a known side effect of nilotinib.
Dietary changes and increased exercise alone didn’t improve numbers, so

by annie63 (Sep 30)

Hi 5 months now since diagnosis, and I’m feeling grateful for nilotinib, as BCR test results started at 136 and I’ve got below 1% now.
It has been picked up that my cholesterol has risen
Category: Side effects

Replies: 2

Last updated: 1 October 2021
snowman 35 on 2 March 2021

Category: Treating CML

Replies: 14

Last updated: 30 September 2021

Tfr and Sprycel. Scuba or anyone?
by snowman 35 (Sep 30)

That is what I am thinking to do Scuba but slowly.... I ll go to 70mg now then 50mg etc and I definetely will try tfr even if I ll do pcr test every three months!

Thank you Scuba for your

by scuba (Sep 30)

Hi Snowman,
Hopefully I can help clarify and settle some concerns.
When CML is reduced to undetected (PCR), the disease has been so reduced or even eliminated (40% of the cases) that it would be

by snowman 35 (Sep 30)

Hi all....

Today I had a phonecall with my doc about tfr.

Unfortunately here in Greece none of both companies that produce Sprycel doesn t undertake the charges for monthly pcr so I can

by snowman 35 (Apr 19)

Hi every one!

I talked with my doc today my pcr results are 0.000 so we discussed again about tfr. He explained me that he has to communicate with the company that produces sprycel in Europe(I
Category: Treating CML

Replies: 14

Last updated: 30 September 2021
reginawagner on 27 September 2021

Category: Blood tests

Replies: 13

Last updated: 30 September 2021

CML and no antibodies
by scuba (Sep 30)

Excellent reference!
.... from the article,
"Substantially more vitamin D is required for optimal immune function than for bone health. It seems Dr Fauci is not ignorant of this, having

by Christine R (Sep 30)

Just found this very readable article about vitamin D and T cells with covid
https://www.bmj.com/content/370/bmj.m3563/rr-6

by sandy craine (Sep 30)

Scuba, thanks for taking the time to write this easy to understand summary of an immune response and the important role that D3 plays.
Sandy

by reginawagner (Sep 30)

Thanks so much, that is a bit of a reassurance!
Category: Blood tests

Replies: 13

Last updated: 30 September 2021
YianniA on 29 September 2021

Category: Side effects

Replies: 2

Last updated: 30 September 2021

Any lymph node issues after taking vaccine as a COVID patient
by YianniA (Sep 30)

Thank you very much for the detailed response. I was diagnosed 5 years ago and have done well. Besides the typical side effects of Dasatinib/Sprycel. Yes I am happy my BCR is down to <0.002

by johnw1001 (Sep 30)

Hi,
You dont say how long ago you were dx with CML.
I had this same problem a few years into treatment for CML and was on imatinib 400 mg and was probably a similar situation to yours .I was

by YianniA (Sep 29)

About one month after taking the JNJ vaccine (March27th), I noticed some tightness on the side of my neck and in the front left side. After a scan we saw lymph nodes were larger which led to a small
Category: Side effects

Replies: 2

Last updated: 30 September 2021