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scuba on 15 October 2021

Category: Uncategorised

Replies: 7

Last updated: 18 October 2021

Treatment Free Remission (TFR) update:
by VickyK. (Oct 18)

That's great news Scuba!!!So happy for you!!!Keep going!All the best of luck!!!

by onekayaker (Oct 18)

Great news Scuba!!!!

by sandy craine (Oct 16)

Dear Scuba,
Great news. 'Cure' ? well what does cure mean anyway. Enjoy TFR and everything else, including Belize. Sandy

by Patch (Oct 16)

That's Fantastic News fingers crossed for you enjoy.
Category: Uncategorised

Replies: 7

Last updated: 18 October 2021
sandy craine on 18 October 2021

Category: Uncategorised

Replies: 0

Last updated: 18 October 2021

3rd Vaccine/booster
by sandy craine (Oct 18)

If any of you are considering a booster/3rd vaccine you would do well to watch this video by Dr. John Campbell on vaccine administration aspiration technique.
Category: Uncategorised

Replies: 0

Last updated: 18 October 2021
kat73 on 7 September 2020

Category: Uncategorised

Replies: 9

Last updated: 15 October 2021

Need a quick answer: Which statin with dasatinib?
by stpaddy (Oct 15)

Thanks for the update Kat73. Glad to hear that you didn't need to take one after all and that things are going well without a statin - good news indeed.

by kat73 (Oct 8)

Well, luckily, I didn't end up having to take one. I got a perfect score (zero) on the Coronary Artery Calcium scan, and that convinced my GP (who re-calculated my risk) that I didn't

by stpaddy (Oct 4)

I see this is an thread from last year but just wanted to mention that my spouse is now dealing with high cholesterol. He's been on 70 mg Sprycel since 2018, does not eat food that is high

by kat73 (Sep 11)

Thanks, Nimbus. As I thought, no answer from the onc on the question of cardiovascular disease starting to show up in long-time dasatinib patients. I broke the sacred doctor message rule
Category: Uncategorised

Replies: 9

Last updated: 15 October 2021
scuba on 13 October 2021

Category: Uncategorised

Replies: 4

Last updated: 15 October 2021

Vitamin D level test results
by cmljax (Oct 15)

My last test was 75 (up from 38 4 years ago). I take 5,000 per day unless I have significant sun exposure, like on Mondays when I play golf. I am a huge believer in this Vitamin D stuff all

by scuba (Oct 14)

Antibody testing does not inform immunity for the reasons I cited above in my post. And the medical establishment knows this.

https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2021

by Faith_05 (Oct 14)

Hi Sandy!
I am thinking my third dose!!I am not sure yet.
But I am a teacher in high school, so i worry a little.
My doc told me to do it. I did an antibody test and the result was 972 AU/mL (

by sandy craine (Oct 14)

Thanks for this Scuba. It's timely for me as my haematologist called me yesterday to talk about whether I have been offered a 3rd vaccine. I am not too sure that I need or want a third vaccine
Category: Uncategorised

Replies: 4

Last updated: 15 October 2021
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