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HelenS on 31 December 2021

Category: Uncategorised

Replies: 9

Last updated: 4 January 2022

4th dose Covid vaccination
by Christine R (Jan 4)

Actually I did the same and was amazed how they now seem to know about 3rd primary and Boosters. Just showed the letter and was asked what my condition was. He typed it in and waived me

by Roza (Jan 4)

Hi, I went into a walk-in centre today along with a letter from my consultant and just had to tick a few boxes on a paper form which they will update later on the system. Very straightforward and

by HelenS (Dec 31)

Christine. Chaos it is. But I think the good thing is that walk in centres are all about getting jabs in arms and that is what I planned to do come the New year...take my NHS vulnerable letter(s)

by Christine R (Dec 31)

I think the main problem in the UK is the nhs website says we are eligible for a 4th but cannot book online or via 119. The only option is via a GP or to go to a walk in centre with proof we are
Category: Uncategorised

Replies: 9

Last updated: 4 January 2022
RC Kirk on 10 May 2018

Category: Uncategorised

Replies: 5

Last updated: 3 January 2022

Is there a way to flag a thread as spam?
by David Fitz (Jan 3)

Thanks Sandy,
There was a second barrage this morning unfortunately. All swiftly gone though!
David.

by sandy craine (Jan 3)

I think David may be away, but I logged on yesterday I spent some time manually deleting that spam attack! We will try to get on top of this in the New Year, we have a few things to sort out with

by RC Kirk (Jan 3)

Thanks for taking the trash out this morning before it had time to get too stinky!

by RC Kirk (May 11)

Very good! David, thanks for doing the "weeding" so we don't get lost in the spam weeds.
Kirk
Category: Uncategorised

Replies: 5

Last updated: 3 January 2022
rebeccacrosby on 15 December 2021

Category: Side effects

Replies: 7

Last updated: 2 January 2022

Tasigna/elevated liver enzymes
by rebeccacrosby (Jan 2)

Thank you. I found it very helpful to read your posts about dose reduction before I asked my dr.

by Buzzm1 (Dec 31)

Rebecca, when it comes to lessening side-effects, nothing even comes close to reducing dosage. Almost all CML patients do fine on reduced dosage so not to worry. Keep any remaining 150

by rebeccacrosby (Dec 30)

Thank you for your reply. I am encouraged by your success at only 200mg. My doctor reduced my dosage to 400mg and that has made all the difference. I feel good and my liver enzymes and

by Zaccar (Dec 30)

Hi,
Also on tasigna for a year now. I have the same issue. I'm at 1.4, my pharmacist called me alarmed by the fluctuations. Mind you my doctor hasn't even brushed the subject .I didn
Category: Side effects

Replies: 7

Last updated: 2 January 2022
mil on 15 December 2021

Category: Uncategorised

Replies: 22

Last updated: 1 January 2022

Booster dose, pfizer covid
by Buzzm1 (Jan 1)

Alastair, don't let that stop you from further lowering your dosage to 100mg. It will further lessen, if not eliminate, any lingering side-effects.

by AlastairC (Dec 31)

Hi Buzz, imatinib dose reduction does not correlate with improved WBC for me. I have known I was neutropenic for over 35 years, and that has probably been the case for longer than that,

by Buzzm1 (Dec 29)

Alastair, with regards to your neutropenia, a lower Imatinib dosage would benefit you. I'm willing to wager that Imatinib 50mg/day will keep you undetected, that's after first lowering

by AlastairC (Dec 28)

Scuba, yes BCR-ABL undetected but WBC around 1.8, Neutrophils 0.8 on a good day. My neutropenia was identified in the late 1980s and was made slightly worse by imatinib since CML Dx 2007. I've
Category: Uncategorised

Replies: 22

Last updated: 1 January 2022
Skeltonn on 20 February 2019

Category: Treating CML

Replies: 3

Last updated: 31 December 2021

Sprycel and weight gain
by Myra (Dec 31)

My son gained weight in the last few months. He is on Dastanib from a year now. But not sure is it from the medicine or his eating habits.

by Chuckster (Feb 25)

No. Just the opposite.
I have experienced weight- loss of approx 20 lbs: From 195 lbs to around 175 lbs.
From Feb 2018 to Feb 2019
Holding around 175 lbs for the last 3 months.
Had to stop the 100mg

by Bill Miller (Feb 21)

Yes and yes. I had terrible fatigue on 140mg. I also waxed and waned between diarrhea and constipation, which amplified the fatigue. And I was only on at that dose for 3.5 weeks. I did also gain

by Skeltonn (Feb 21)

Thank you for the reply. I have gained about 30 pounds in the last 12 months. I am 12 months from first being diagnosed and still trying to navigate this disease.
Category: Treating CML

Replies: 3

Last updated: 31 December 2021
ssss on 29 December 2021

Category: Children & young people

Replies: 8

Last updated: 31 December 2021

Plateau in results: update
by Buzzm1 (Dec 31)

Roza, those are a few of my own observations over the last five years.
Two things I quickly noticed about plateaus at low CML levels:
1. they seemed impervious to gradual dosage reduction or

by Roza (Dec 31)

Hi Buzz,
Are you aware of any study or data that supports evidence of a reduction in the IS ratio after a plateau ?
If there is good scientific evidence of this then it be would be helpful in making

by kat73 (Dec 31)

It is not true that you can't go back to imatinib after switching to dasatinib. Also wanted to add to my other reply that I've been on 20 mg dasatinib for about 4 years.

by Buzzm1 (Dec 31)

ssss, I had a reason.for asking you to post your son's test dates and results.
After a CML patient has either been undetected, or plateaued, at levels below 1.0, for a year, or so, it is
Category: Children & young people

Replies: 8

Last updated: 31 December 2021
johnw1001 on 12 August 2021

Category: About CML

Replies: 10

Last updated: 31 December 2021

CML survival rates
by johnw1001 (Dec 31)

Hi Roza
Thanks for posting with some afterthoughts.
Yes it is surprising to see the NHS site come out with such low 5 year survival rates.Googling" CML survival rates", what seems to be

by Roza (Dec 30)

Hi John,
Late reply....
I did reflect on the following after my Dx.
In the UK newly diagnosed CML patients are likely to look for and read the NHS listed survival rate, it being a trusted source.

by johnw1001 (Sep 6)

Hi Eva,
The book by Jessica Wapner is truly a good read and an excellent piece of medical journalism which is not beyond the understanding of most patients with even a minimal science background.

by EvaH (Sep 5)

Tki have only been commercially available since 2000s, they have been knocking around in some form since the late 80s.
"The Philadelphia Chromosome" is a recommended read on the full history,
Category: About CML

Replies: 10

Last updated: 31 December 2021
Zaccar on 30 December 2021

Category: Treating CML

Replies: 2

Last updated: 30 December 2021

Undetectable with 200mg tasigna in 12 months.
by Zaccar (Dec 30)

Hi,
Great suggestion. With one pill a day I have struggled less and less with the fasting. But that's something i'll discuss with my next doctor. I'm planning to change to a

by sandy craine (Dec 30)

Hi Zaccar, thanks for your post which is honest and really interesting. One question I do have is - given that you travel such a lot, would another 2Gen TKI be easier for you - one without a fasting

by Zaccar (Dec 30)

Howdy,
I was diagnosed last year with april 2020 with CML, my treatment is working very well at present. I didn't want to be one of those people that used the site when they needed the help then
Category: Treating CML

Replies: 2

Last updated: 30 December 2021
Buzzm1 on 17 December 2021

Category: Uncategorised

Replies: 12

Last updated: 29 December 2021

False Alarm
by scuba (Dec 29)

My bcr-abl reports read "undetectable".
For several years before I would receive PCR reports of bcr-abl < 0.01% and then it went to "undetectable". I remained at "

by kat73 (Dec 29)

Thanks, Scuba, for the every other day method. Glad to hear you're still TFR. Are you actually getting back 0.000 undetectables?

by scuba (Dec 27)

Kat - When I decided to attempt TFR, I first decided to cut my 20 mg daily dose to every other day. And then every third day. Something to consider when you decide to try TFR. I did this as a way to

by Buzzm1 (Dec 27)

Thanks Israel. The LLS discussion forum recently changed software again, unfortunately not for the better; in doing so internal bookmarks changed and many profiles were lost so my personal
Category: Uncategorised

Replies: 12

Last updated: 29 December 2021
ssss on 27 December 2021

Category: Children & young people

Replies: 11

Last updated: 29 December 2021

Plateau in results, need guidance
by ssss (Dec 29)

Hi all,
My son's doctor suggested dasatinib 100 instead of bosutinib.

Hopefully he has no side effects with this.

We will be doing an IRMA test tomorrow just to be sure of imatinib

by sbp03 (Dec 28)

Hi, I'm also have talassemia beta trait, hemoglobin around 10 (used to be around 12,5 before CML-Imatinib) and a slight increase of iron in the body. Since March, 2018 on Imatinib 400 gr. and

by ssss (Dec 28)

Thanks for your helpful reply. I will definitely post updates. Hopefully the doctor starts him on a lower dosage.

by Buzzm1 (Dec 27)

ssss, at levels below 1.0, CML presents no real danger to a patient's health. One of the biggest mistakes oncs/hemas make is to prescribe a super-high TKI dosage, when CML is below 1.0, in
Category: Children & young people

Replies: 11

Last updated: 29 December 2021
sandy craine on 27 December 2021

Category: Uncategorised

Replies: 0

Last updated: 27 December 2021

iCMLf update -Michele Baccarani 1942 -2021
by sandy craine (Dec 27)

Vale Michele Baccarani - 1942-2021
It is with great sadness that we share the news of the death of Professor Michele Baccarani. A friend and colleague to so many in the CML community and beyond
Category: Uncategorised

Replies: 0

Last updated: 27 December 2021
sandy craine on 22 December 2021

Category: Other conditions

Replies: 2

Last updated: 27 December 2021

UK SECURES MILLIONS MORE ANTIVIRALS TO HELP FIGHT OMICRON
by sandy craine (Dec 27)

Thanks for this link - If anyone on TKi (and/or other) therapies is considering adding anti-viral medications, it is obviously strongly recommended that you read the details provided and assess the

by Heidi S (Dec 27)

I am not saying that this is an end-all-be-all… but dastinib and nilotinib are listed as having side effects with the most effective drug for omnicron. (Page 10)
https://www.fda.gov/media/

by sandy craine (Dec 22)

**FOR IMMEDIATE RELEASE**
UK signs contracts to buy a further 4.25 million courses of antivirals for the NHS

Monumental deals have been accelerated to combat the Omicron variant and protect
Category: Other conditions

Replies: 2

Last updated: 27 December 2021
Christine R on 11 March 2021

Category: Uncategorised

Replies: 5

Last updated: 24 December 2021

Response to 1st dose of vaccine by blood cancer patients. BBC this morning
by (Dec 24)

Many people wonder about the reaction to the first dose of the vaccine in blood cancer patients—some cancer treatments, like chemotherapy or radiotherapy, lower immunity. COVID-19 vaccines may

by Christine R (Mar 12)

Thanks Sandy
There is a lot more information on twitter about the study which included a youtube video of one or the research scientists. Participants were elderly and eligible for vaccination

by sandy craine (Mar 12)

Hi Christine, remember that this is about 'immunocompromised' cancer patients... Cancer is an umbrella term and some cancers require quite invasive treatment with chemotherapy agents and/or

by Christine R (Mar 11)

Thanks David.
No specifics of the blood cancer but does make you wonder where that leaves us. Most of us will have had the first dose over 3 weeks ago so does it mean we go back to
Category: Uncategorised

Replies: 5

Last updated: 24 December 2021
gillianmays on 24 August 2018

Category: Side effects

Replies: 14

Last updated: 22 December 2021

What reason would there be to be withdrawn from treatment due to being unwell and a rash?
by jonnie turpie (Dec 22)

Thanks for this post. I've been fatigued for quite a while and the addition of itchy scratchy scalp just makes it all worse each morning. I will give it some time. Take care.

by jonnie turpie (Dec 22)

Thanks for this post. I've been fatigued for quite a while and the addition of itchy scratchy scalp just makes it all worse each morning. I will give it some time. Take care.

by AlastairC (Sep 2)

Hi Gillian, just a quick thought on the question of dissolving imatinib tablets. There has been some discussion on here in the past about dissolving imatinib in apple juice - might be worth a try?

by gillianmays (Sep 2)

Thank you for replying to me. After reading some of the responses, I feel that maybe I haven't allowed Imatinib to be given a chance? After being advised that I will get 'some' side effects, I just
Category: Side effects

Replies: 14

Last updated: 22 December 2021
Karthikeyan on 13 December 2021

Category: Uncategorised

Replies: 3

Last updated: 21 December 2021

To uk members, imatinib uk generic price
by johnw1001 (Dec 21)

I am not sure how useful it is to compare pricing across nations of drugs such as Glivec (branded imatinib) and the various generic versions of imatinib-it is partly a function of the competition

by AlastairC (Dec 13)

In UK the National Health Service pays for the drugs which are used (from Government taxes); patients do not have to pay.

by Vikram (Dec 13)

Hii karthikey Last time chekup (last week) I asked doctor if imatinib fail 2 nd generations tki free / cost?? He said free.... Your tki? Imtinib?

by Karthikeyan (Dec 13)

Hello everyone, in india we can get imatinib 400 mg tablets for one month for just 10 to 15 pounds.

What is the price of generic imatinib 400 mg in uk for 1 month.
Category: Uncategorised

Replies: 3

Last updated: 21 December 2021
Felix on 18 December 2021

Category: Blood tests

Replies: 13

Last updated: 21 December 2021

PCR TEST FROM NHS
by Ismo (Dec 21)

I have also received email and PCR test but unless I have misread it the Blood Cancer UK info on anitvirals etc suggests that CML patients are not yet eligible for those treatments (I forget names)

by Christine R (Dec 21)

Hi Alistair .
Blood Cancer UK say it cover Sotrovimab, molnupiravir and Ronapreve. I understand they are antivirals and mono clonal antibodies. Sorry if any of that is spelt wrong.

by HelenS (Dec 20)

I received my email today. The email concentrates mainly on the procedure to follow regards the PCR test and what will happen after a positive test. But there is a link in there that takes you to

by David Fitz (Dec 20)

Alastair,
The email is vague. Not purposefully because 99%+ of people won’t know / care about the name of the medication, but just talks about “new treatments”.
The NHS is using
Category: Blood tests

Replies: 13

Last updated: 21 December 2021
Buzzm1 on 19 December 2021

Category: Uncategorised

Replies: 5

Last updated: 21 December 2021

Rising number of blood cancer patients dying of Covid in England and Wales
by scuba (Dec 21)

This is a key statement you made:
"My family had COVID last year and honestly my wife and son's symptoms were worse than mine."
Anyone who has gone through CML - especially those who

by ColoradoGuy (Dec 20)

Scuba - Thanks for the clarification. I too thought that was a broad umbrella when I read the headline of the article. I will be getting my second of two shots next month but don't

by scuba (Dec 20)

It very much depends on the type of blood cancer. Blood cancer is a broad label and CML is not in the risk profile in comparison to B-cell lymphocytic cancer:
https://www.cancer.gov/news-events/

by Dustylloyd (Dec 20)

I mentioned this comment to my doctor this morning, I was under the impression we (Cmls) were as safe as anyone else after having are booster jabs, but are problem is the recovery side of covid, he
Category: Uncategorised

Replies: 5

Last updated: 21 December 2021
brandonromeril99 on 18 December 2021

Category: Uncategorised

Replies: 0

Last updated: 18 December 2021

Neutrophil level?
by brandonromeril99 (Dec 18)

Recently started taking imatinib (about 4 weeks ago), I had ALL in 2017, been in remission since. But my BCR level rose up back in and been put on imatinib. My worst fear is becoming neutropenic
Category: Uncategorised

Replies: 0

Last updated: 18 December 2021
mariatot on 2 December 2021

Category: Drug-drug interactions

Replies: 5

Last updated: 17 December 2021

Nilotinib plus Peginterferon Alfa 2a and use of Milk Thistle and Globe Artichoke
by mariatot (Dec 17)

Thanks Sandy,
Have suggested a dose interruption until her fluid is under control and then dose reduction now that she's MMR, which has been oked by the hematologist. So will wait and see.
Maria

by sandy craine (Dec 7)

Hi Maria,
All TKIs have side effects (grades 1 - 4) and it seems that it depends on the individual whether they are manageable or not. Some fortunate people do not have significant side effects at

by mariatot (Dec 3)

Hi Sandy,
Forgot to tell you that when my mum was initially started on Imatinib, she had previously been prescribed hydrea (chemo drug) 1 x 500 mg in 2018 whilst the hematologist ran other tests, as

by mariatot (Dec 3)

Hi Sandy,
Thanks for our response and valuable feed back.
Long story.....She initially started on Imatinib - max dose and it drastically depleted her platelets and white blood cells causing her
Category: Drug-drug interactions

Replies: 5

Last updated: 17 December 2021
David Fitz on 17 December 2021

Category: Uncategorised

Replies: 0

Last updated: 14 January 2022

Hammersmith Hospital: Ask the CML Expert
by David Fitz (Dec 17)

Details of a fantastic new service Hammersmith Hospital in London are offering to all CML patients and doctors. A chance to engage with experts.
Category: Uncategorised

Replies: 0

Last updated: 14 January 2022