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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
ishb1 on 28 April 2021

Category: Blood tests

Replies: 2

Last updated: 29 September 2021

Rising Level of Bilirubin
by JPD (Sep 29)

Ive had bilirubin 1.6 before and my Onc has said not to worry about it in the slightest. Im assuming your other liver panels are within normal range? If so, I wouldnt sweat it at all. Worry

by johnw1001 (Sep 26)

Hi,
I have had some liver issues (certain scores) recently after long term use of imatinib but my Bilirubin is normal. My consultant told me that it is not unusual in the early stages of taking a

by ishb1 (Apr 28)

I am currently on Imatinib 400 MG, diagnosed back in October of 2020. Noticed my bilirubin has been slowly rising the last few weeks. Has any one else had this happen? I read that intense exercise
Category: Blood tests

Replies: 2

Last updated: 29 September 2021
Mick E on 1 September 2021

Category: Uncategorised

Replies: 10

Last updated: 28 September 2021

Insulin resistance
by Mick E (Sep 28)

I’ve had an hba1c test which I queried as it does not specifically check for high insulin levels. The test came back as normal glucose levels, but from what I’ve read

by Mick E (Sep 17)

Thanks Sandy I will have a look at information sheets on those drugs.
I speak to specialist in 3 weeks so hopefully it will give me time to get a clearer picture of what’s happening.

by sandy craine (Sep 17)

Hi Mick,
OK, so hyper (too much). Scuba makes some good suggestions re exercise and low carb diet for weight loss etc. but that may not be an issue for you? If you did not have this problem before

by Mick E (Sep 17)

Thanks for the detailed reply Scuba! 😊
I do a lot of exercise (within my limits) and constantly monitor recovery levels to ensure I don’t overdue things. Did my first 24 hour fast last
Category: Uncategorised

Replies: 10

Last updated: 28 September 2021
SS86 on 26 September 2021

Category: Side effects

Replies: 6

Last updated: 28 September 2021

Skin Rashes/ allergy - is it a side effect of dasatinib
by Felix (Sep 28)

Hi, that sounds good to me ,certainly don't need to be on 100 mg with that result .Press for a gradual dose reduction to 50 mg then 20 mg .As a 5'3" woman I refused to go on 100

by SS86 (Sep 28)

Hi Denise,
it was .0098 last time however the one done recently is yet to come
Thanks

by Felix (Sep 27)

Hi, if your results are good then you need a dose reduction by the sound of it ,it's your body telling you 100 mg is too toxic .What is your latest BCR ABL. Denise.

by SS86 (Sep 27)

Hi All,
Our hematologists have advised to stop dasatinib 100 mg dose for 3 days to evaluate if the skin rashes are due to dasatinib.
The results on Dasatnib 100 mg were good so far and if this needs
Category: Side effects

Replies: 6

Last updated: 28 September 2021
EvaH on 24 September 2021

Category: Treating CML

Replies: 5

Last updated: 26 September 2021

Dose Reduction- My Hematologists reaction
by sandy craine (Sep 26)

Hi Eva, not sure I agree with the age thing. Prof.Richard Clarke - the lead investigator of the DESTINY trial is now retired.
There is certainly a divide between those clinicians/researchers who

by EvaH (Sep 26)

Thanks for the comments, very helpful.
And yes my current hematologist is ancient. Past retirement in Europe most likely.

by Christine R (Sep 25)

Hi Eva

I think haematologists do fall into the 2 camps of either dose reduction or all or nothing. I asked my local haematologist about a possible dose reduction and his view was that i was

by Buzzm1 (Sep 24)

EvaH, by first reducing your dosage prior to any TFR attempt, should you fail TFR you can restart on a very low TKI dosage (Imatinib 100mg), rather than the full TKI dosage (Imatinib 400mg) that
Category: Treating CML

Replies: 5

Last updated: 26 September 2021
Nonkuthalo on 22 September 2021

Category: Blood tests

Replies: 2

Last updated: 23 September 2021

Can you be pregnant while living with CML
by Nonkuthalo (Sep 23)

Thank you very much for your answer. I'm really relieved to hear that.

by scuba (Sep 22)

Yes.
Once your CML is under control (and it will), you can expect to have a family one day.

by Nonkuthalo (Sep 22)

Hello

My name is Nonkuthalo and I am 27 years old, I have been diagnosed with cml earlier this year and I was wondering if I will ever be able to have my own children one day?
Category: Blood tests

Replies: 2

Last updated: 23 September 2021