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johnw1001 on 1 September 2021

Category: Treating CML

Replies: 77

Last updated: 24 October 2021

Third or booster Covid jab for "vunerable" patients in UK
by Nimbus2 (Oct 24)

This is another take on the situation:
https://www.independent.co.uk/voices/covid-vaccine-uk-immunosuppressed-p...

by Nimbus2 (Oct 24)

I have responded, John, to your private message. Something is very wrong. My GP indicates that no information has been received from the specialist. The trust flatly refused to talk to me as an

by johnw1001 (Oct 24)

Nimbus I have sent you a private message -on receipt may we discuss a possible course of action further.
This shows a total dereliction of duty by a consultant/NHS trust and a difficult GP .
The

by Nimbus2 (Oct 24)

After weeks, my GP will not move forward with the Third Primary Dose without a consultant's letter. The hospital trust will not speak to patient individually. So I am locked out.
Freedom of
Category: Treating CML

Replies: 77

Last updated: 24 October 2021
Ontasigna on 21 October 2021

Category: Treating CML

Replies: 2

Last updated: 22 October 2021

Nilotinib Night sweat and severe joint pain
by Tanya (Oct 22)

Hi, I'm on Tasigna from May 2021 and experienced the same problems in mid August when heat wave lasted 4 weeks - up to +40C in the shadow.

Unfortunately it was in combination with my second

by sandy craine (Oct 22)

Hi, you may have some kind of infection. Do you have access to your most recent PCR result?
Sandy

by Ontasigna (Oct 21)

Hi All
Recently, I got exposed to high temperature(32 deg centigrade). Since then I have been having severe joint and muscle pain and night sweats like I used to have before diagnosis.
I am on
Category: Treating CML

Replies: 2

Last updated: 22 October 2021
VickyK. on 21 October 2021

Category: Side effects

Replies: 0

Last updated: 21 October 2021

High prolactin and nilotinib
by VickyK. (Oct 21)

Hello!Hope you are all well☺️

Has any of you experienced high prolactin (hormone) during treatment with nilotinib or any other TKI??
Vicky
Category: Side effects

Replies: 0

Last updated: 21 October 2021
Betty8 on 20 October 2021

Category: Treating CML

Replies: 5

Last updated: 21 October 2021

Your expert advice needed pls- 2 Failed TKI's, BCR ABL 29%... what next?
by wshi2001 (Oct 21)

Hi, Betty,
Have you tried Nilotinib yet? I also started with imatinib, it did not work so well. Then I was switched to Dasatinib, similarly, it gave me a lot of side effects. I asked my

by Betty8 (Oct 20)

Thankyou so much for your quick response Scuba.
I have a meeting with my haematologist tomorrow so will tell them about your experience with Dr. Jorge Cortes then.
it’s reassuring to

by scuba (Oct 20)

I understand now. I went through a similar phase. Although my doctors waited until my neutrophils fell to 0.4 before stopping dasatinib.
What they did for me and I suggest for you in consultation

by Betty8 (Oct 20)

Hi Scuba.
I was diagnosed last August 2020.
They stopped my Dasatinib last week as my blood counts were low and wanted to give me a week break to see if they stats recovered.
BCR ABL 29% /
Category: Treating CML

Replies: 5

Last updated: 21 October 2021
shayner on 19 October 2021

Category: Uncategorised

Replies: 5

Last updated: 20 October 2021

Discontinuing imatinib
by AlastairC (Oct 20)

Yes I am very busy with work and enjoy it most of the time. You may well have to ask to get Vit D tested - it is not in the normal list of tests they do - probably should be, especially in Covid

by shayner (Oct 20)

I really need to find these things out! At my hospital I’m under general haematology and they really only manage me generally as I’ve been so stable so long and I think I’m the

by AlastairC (Oct 20)

My vitamin D was tested a few weeks ago at 76 mmol/litre, which is about 30 ng/ml. I want to get to around 60-70 ng/ml - I suspect some people would say a bit higher than that. I recently started

by shayner (Oct 20)

Thanks Alistair. I reduced myself to 200mg a couple of years ago because of the tiredness in an effort to get a bit more energy, but it didn’t effect the side effects at all. The reason I
Category: Uncategorised

Replies: 5

Last updated: 20 October 2021
Karinne on 14 October 2021

Category: Uncategorised

Replies: 19

Last updated: 18 October 2021

My pcr result after 3 years without Sprycel is still undetected
by Karinne (Oct 18)

Thanks

by Karinne (Oct 18)

Thanks

by VickyK. (Oct 18)

Congrats Karinne!!!Continue like that!!!I wish you all the best from my heart!

by Karinne (Oct 18)

Yes. Keep trying
Category: Uncategorised

Replies: 19

Last updated: 18 October 2021
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