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EvaH on 17 October 2024

Category: About CML

Replies: 1

Last updated: 17 October 2024

Undetected BCR/ABL but low levels of ABL detected
by scuba (Oct 17)

Low levels of ABL detected refers to the detection of the ABL gene, which is a normal gene present in all cells. The ABL gene serves as a control in PCR tests to confirm the test's accuracy. Low

by EvaH (Oct 17)

Hi all
I've been TFR since 2021 and my latest results show BCR-ABL as undetected but low levels of ABL detected - has any one had this happen?

What might it mean?
Eva
Category: About CML

Replies: 1

Last updated: 17 October 2024
snowman 35 on 7 October 2024

Category: Blood tests

Replies: 3

Last updated: 17 October 2024

Bcr abl a little up
by EvaH (Oct 17)

Oh this sucks!

I remember the feeling all too well
Happened to me about 6 months into TFR but please wait, it may well go down again. It did in my case and its stayed undectable.

by snowman 35 (Oct 7)

It is hard to manage the anxiety that causes me at the time but I totally understand what you say!Thank you!

by AlastairC (Oct 7)

This is nothing to worry about. Variation in the third placed of decimal in the result is likely an artefact of the test process and nothing to do with your disease. The third place has only been

by snowman 35 (Oct 7)

Hi all

I just got my pcr test and from undetected now is 0.004.Except one more time in the past that was 0.002 all the other PCR was undetected .I am starting freaking out now....I take
Category: Blood tests

Replies: 3

Last updated: 17 October 2024
DrFord on 9 August 2024

Category: Treating CML

Replies: 16

Last updated: 15 October 2024

Dasatinib resistance, or suboptimal response?
by JoeP (Oct 15)

You’re making some big moves with Nilotinib. I had similar drops but not as wide on Nilotinib. Definitely let us know what happens on 11/11. If you keep it up you could pass MMR on this next test.

by JS001 (Oct 15)

Hi Chris,
That's great news! I'm pleased that Nilotinib appears to be working and that your numbers are moving in the right direction. Fingers crossed that you reach MMR soon.
Take care
James

by DrFord (Oct 15)

My BCR-ABL result on 04.10.24 came back at 0.5% after switching from 100mg Dasatinib.
To re-cap:

23.04: 1.5%

04.06: 1.7%

26.07: 1.2%

22.08: 1.2% switched to Nilotinib.

by DrFord (Sep 2)

Hi Martin, thank you for your kind words of support and encouragement. It is reassuring to know my experience so far is not to dissimilar to yourself and your friends. Thank you for sharing and any
Category: Treating CML

Replies: 16

Last updated: 15 October 2024
Smee on 1 April 2024

Category: About CML

Replies: 4

Last updated: 15 October 2024

Kidney function cystatin c test in UK.
by beero (Oct 15)

Any updates? I think I also have some similar issues, although I'm still "only" 5 years on imatinib.

by AlastairC (Oct 3)

Thanks for these posts. I had a fasting cholesterol a few months ago and the kidney function test taken at the same time indicated a minor issue - although it might have been that I was dehydrated

by johnw1001 (Oct 1)

Hi

Just a follow up on this

The cystatin c test is available in UK and has been approved for use under NICE guidance-apparently in cases where for various reasons the usual urine,

by johnw1001 (Sep 30)

Hi

Thanks for this posting

Having been on imatinib for 17 years my creatinine level and gfr has steadily declined -especially over the last few years . Currently my specialist and my GP
Category: About CML

Replies: 4

Last updated: 15 October 2024
davidmoler08 on 7 October 2024

Category: Side effects

Replies: 3

Last updated: 12 October 2024

CML spreading?
by David Fitz (Oct 12)

The CNS route is, I believe, one of the reasons that dasatinib is used in PH+ ALL. I don’t know a whole lot more though.
David.

by ColoradoGuy (Oct 11)

It can in very rare cases spread through the central nervous system (CNS) in which case Dasatinib is better in attacking it there. There are however, many, many other things that can cause this

by David Fitz (Oct 8)

Hi,
CML doesn't really spread in the traditional sense when you think of cancer more generally. But because it affects your blood it can cause problems around your body. For example, if your blood

by davidmoler08 (Oct 7)

Recently I have been having much more dizziness than usual. I even wake up with the spins really bad and can’t get up right away till they stop. I decided to see an ENT and after some crazy tests
Category: Side effects

Replies: 3

Last updated: 12 October 2024
Amanda Lax on 6 October 2024

Category: Uncategorised

Replies: 5

Last updated: 7 October 2024

Confusion!
by AlastairC (Oct 7)

Amanda do keep in touch either on the forum or you can send me a direct message using the envelope icon in the top line of the page.
If you were disagnosed in June you are just past 3 months so

by Amanda Lax (Oct 7)

Hi Alastair,

Thanks for your reply, i have to say i feel a lot better today , such a good forum for settling the fear a bit! I must have missed the just diagnosed page completely, it was just

by AlastairC (Oct 7)

Hi Amanda welcome.
I'd like to point you at this page https://cmlsupport.org.uk/section/just-diagnosed , especially the template questions to ask your consultant. Many people find getting an

by Amanda Lax (Oct 7)

Hi James,

Thanks so much for taking the time to do such a comprehensive reply, i think ive been concentrating on my white cell count alone, and ive realised that i have a lot more to think
Category: Uncategorised

Replies: 5

Last updated: 7 October 2024
johnw1001 on 29 September 2024

Category: Other conditions

Replies: 2

Last updated: 30 September 2024

Winter 2024 vaccines-UK
by johnw1001 (Sep 30)

Hi David

Looking at the leaflet on RSV it does not include the category "these with specific health conditions."
One dose does give protection for a number of years I believe?
I dont know if

by David Fitz (Sep 30)

Hi John,
I believe there are only two groups of people who are eligible for the RSV vaccine - the group you have highlighted, and anyone pregnant past 28 weeks.
Just having CML is not, as far as I

by johnw1001 (Sep 29)

Just a reminder that those in certain categories

-age related

-condition related such as blood cancers

qualify for Autumn /Winter 2024 Covid vaccines as from 3 October in UK
In
Category: Other conditions

Replies: 2

Last updated: 30 September 2024
johnw1001 on 16 September 2024

Category: Side effects

Replies: 1

Last updated: 23 September 2024

CML Horizons -Cardiovascular risks for CML patients on tkis
by Dustylloyd (Sep 23)

Hi John,
Always interesting any comments made by you, with interesting information about cml, I noticed in the last paragraph the comment about ecg check on certain tki medication, after, over 9

by johnw1001 (Sep 16)

Hi All,

If you look at the CML Horizons 2024 Videos etc posted here in "Home" you will come across a pdf /slide presentation presentation on Day 2 from an author Natalia Lopina on Cardio
Category: Side effects

Replies: 1

Last updated: 23 September 2024
Karinne on 20 September 2024

Category: Uncategorised

Replies: 7

Last updated: 23 September 2024

pcr result still undetected after 6 years in TFR
by Karinne (Sep 23)

Thanks. I took Sprycel for 4 years and was at MR4 after one year. Then I got a massive pleural effusion and had to stop my medication. I never went back on it because my pcr was stable at undetected

by Sav_5 (Sep 23)

Hi Karinne, that's great and hopeful for rest of us!! I wish you always remain Tfr! How long you were on TKIs and undetectable before you tried TFR?
Savvas

by Buzzm1 (Sep 21)

Karinne, I've been testing annually for the last five years although in 2021 I had a blip and retested.
Buzz

by Karinne (Sep 21)

Thank you Buzz. So good to hear about your 8 years coming!!!! How often do you test? I still do every 6 months.
Category: Uncategorised

Replies: 7

Last updated: 23 September 2024
Dustylloyd on 12 September 2024

Category: Side effects

Replies: 4

Last updated: 20 September 2024

Diabetes
by Dustylloyd (Sep 20)

Hi joeP
Many thanks for your reply, and hopefully everything settles down for you very soon, its now only a week since I received my diabetes great result, and I’m still so surprised, I repeat the

by JoeP (Sep 19)

Yes I have developed hyperlipedemia while on Nilotinib. Also I have severe dry eye and constipation. I too try to lead a healthy lifestyle but the effects persist. Your responses give me hope as I

by Dustylloyd (Sep 18)

Hi hannibellemo,
Firstly thank you for your reply, it answers what I’ve asked before about the side effects of these lifesaving drugs, they can have or create other health issues whilst doing there

by hannibellemo (Sep 18)

Nilotinib is known to raise blood sugar, blood pressure, and cholesterol. I was just on the cusp of Type 2 diabetes and my cholesterol had gone up. When I was on my short-lived TFR, I had a
Category: Side effects

Replies: 4

Last updated: 20 September 2024
Justine on 16 September 2024

Category: Treating CML

Replies: 3

Last updated: 16 September 2024

Sprycel - dasatanib generic
by Justine (Sep 16)

Thank you both. That is good news. I will switch to generic next month.

by David Fitz (Sep 16)

Hi Justine,
We have lots of people on generic dasatinib in the UK. It’s gone down very well really. It’s the same stuff so no need to worry.
David.

by Buzzm1 (Sep 16)

WESTON, Fla., Sept. 4, 2024 /PRNewswire/ - Apotex Corp., an affiliate of Apotex Inc. ("Apotex"), announced today the launch of dasatinib tablets, a generic version of Sprycel®1, in the United States

by Justine (Sep 16)

Hello - My specialty pharmacy called last week and asked if I want to fill my Sprycel Rx refill with generic. I did not know it was available yet. Does anyone know? A Google search produced nothing
Category: Treating CML

Replies: 3

Last updated: 16 September 2024
snowman 35 on 29 December 2021

Category: Drug-drug interactions

Replies: 4

Last updated: 13 September 2024

Homeopathetic treatment and tki
by snowman 35 (Sep 13)

Hi all!

As I mentioned to an other thread the last month I have dermatitis (eczema)to different places on my body.I decided to try homeopathy because ita had helped me a lot I'm the past!Does

by snowman 35 (Jan 4)

Thank you both for your replies!

The first time I asked my doc he told that there is no problem... The second told me that he can not be sure....

I agree with you Sandy. That is what I

by sandy craine (Dec 30)

I also use homeopathic remedies. I am sure there would be no interaction between the two systems of medicine. Homeopathy uses infinitesimal doses of any indicated remedy (which is why some do not

by Tiffdenson (Dec 29)

I am on 50g of Sprycel. I also believe greatly in homeopathic. What have you used since being diagnosed? I take a good amount of supplements (some herbal), like milk thistle and mushroom extracts
Category: Drug-drug interactions

Replies: 4

Last updated: 13 September 2024
Sd on 4 September 2024

Category: Side effects

Replies: 1

Last updated: 12 September 2024

Neuropathy and Imatinib
by johnw1001 (Sep 12)

Hi

I have been on imatinib for 17 years and have for many years suffered non diabetic peripheral neuropathy .This has been accompanied by muscular cramps at night so nightimes are are not a

by Sd (Sep 4)

Has anyone experienced peripheral neuropathy or restless leg syndrome from imatinib?
Category: Side effects

Replies: 1

Last updated: 12 September 2024
Alan Locke on 2 September 2024

Category: Children & young people

Replies: 2

Last updated: 12 September 2024

How to improve haemoglobin levels when on Imatinib
by Nimbus2 (Sep 12)

The Birmingham laboratory's Hb range is 130 to 171. Long before I was diagnosed with CML, I naturally sat at the bottom end.
Now, I range from 120 to 129, even with week-to-week variations.
On one

by Alan Locke (Sep 11)

Has anyone come across "Beetroot Therapy "?!

by Alan Locke (Sep 2)

I have been on Imatinib 400mg for three years.

Recently, my haemoglobin levels have dropped to 130Hb.

My consultant isn't too concerned at present as result is expected for my treatment
Category: Children & young people

Replies: 2

Last updated: 12 September 2024
CHARLES on 31 August 2024

Category: Uncategorised

Replies: 6

Last updated: 11 September 2024

Dasatinib increase
by CHARLES (Sep 11)

Hi Kat, many thanks for your comments. It's now a week into the reduced dose and I'm certainly not so troubled by the side effects. And your point about taking more will not change the PCR picture

by kat73 (Sep 7)

Charles, I'm pretty sure your increased symptoms were from too much dasatinib. I have always been told dasatinib is not dose dependent (as imatinib is), but is instead a threshold drug. In other

by CHARLES (Sep 3)

Hi David
I have now been returned to 50mg Dasatinib so I'm fully aware that next month's test result will decide the way forward. Asciminib has already been mentioned a couple of times and that may

by David Fitz (Sep 1)

0.215% probably did merit an increase. It’s over MMR, so if you are taking under a standard dose the first thing really would be to increase to the standard one at 100mg. I do think that 100mg is a
Category: Uncategorised

Replies: 6

Last updated: 11 September 2024
Sara G on 15 August 2024

Category: Side effects

Replies: 12

Last updated: 11 September 2024

Imatinib eye issues
by Sara G (Sep 11)

Thanks to everyone who replied to my post! Just to update, my consultant has now switched me from 400mg of Imatinib to 400mg of Bosutinib following advice from the team at the John Radcliffe in

by Sara G (Aug 20)

Thanks Pojo, I hope a change of TKI will do the trick for me! I’d almost forgotten what normal healthy eyes feel like and it was amazing when they went back to normal so quickly! Made me realise

by JoeP (Aug 19)

I experienced eye issues with imatinib for years. I had to stop drinking coffee and alcohol to prevent the hemorraging. At the end of my imatinib use I started to experience extreme dry eye. When I

by Felix (Aug 19)

Hi, less is more with Dasatinib,I would go with 20 mg ,your doc might fight with you to go on 50 mg but it’s your body , you are the one that has to live with the side effects .If it doesn’t work
Category: Side effects

Replies: 12

Last updated: 11 September 2024
kat73 on 13 August 2024

Category: Uncategorised

Replies: 10

Last updated: 7 September 2024

When Blood Breaks Down
by kat73 (Sep 7)

OK, I've now read When Blood Breaks Down; Life Lessons from Leukemia, by Mikkael Sekeres, and it was a valuable read. The patient with the CML is even pregnant, for all those out there interested

by JoeP (Aug 28)

This is interesting what you wrote Pat, “… Consequently, people with these disorders often have enlarged spleens, livers, or lymph nodes...”. No matter how much I try for that elusive flat 6 pack

by kat73 (Aug 28)

Pojo - Yes, The Philadelphia Chromosome is a must-read for us! (And a re-read every decade maybe.) Fascinating, valuable book. Pat - I love the anthropomorphism of your quote! I can just see

by hannibellemo (Aug 28)

Joe, I did read this, way back in 2014. Now I'm going to have to dig it out of my library and take another look!
Category: Uncategorised

Replies: 10

Last updated: 7 September 2024
SS86 on 31 August 2024

Category: Side effects

Replies: 5

Last updated: 6 September 2024

Effect of Nilotinib on liver
by saa3 (Sep 6)

When I was treating with my first doctor, I was on 400mg BID Nilotinib for about a year

and my liver enzymes showing right above the upper limit and also the Billirubin level which gave me a

by ColoradoGuy (Sep 3)

I am on 600mg Nilotinib. I had to vary my dose recently to stretch it out as I switched insurance carriers. My numbers did not change much so I think I will be trying 300mg in the morning and

by SS86 (Sep 3)

Is there about one else who has been taking nilotinib and faced issues with liver.
If so what did your doctor advise . Did anyone lower the dose of medicine or changed the medicine or stopped it

by SS86 (Sep 1)

Thank you so much for your reply . I wish the readings remain stable forever.
We are thinking of taking a break from the drug for a while and give sometime for the liver to recover as our readings
Category: Side effects

Replies: 5

Last updated: 6 September 2024
David Fitz on 20 July 2024

Category: Uncategorised

Replies: 8

Last updated: 5 September 2024

CML patient with an MPN (Myeloproliferative neoplasms)
by David Fitz (Sep 5)

Thanks Alaina, but due to a bunch of factors we are only looking for people in the UK. It certainly seems to be a rare combination!
David.

by Alaina (Sep 5)

Polycythemia Vera and CML here. Not in the UK, however.

by David Fitz (Jul 29)

Christine, the request is not starting from your case. It's from the wider MPN research group in the NHS looking for CML patients, rather then the CML research group looking for other MPN patients.

by Christine R (Jul 28)

I think my case has been discussed with other consultants around the world and i would assume the request to find details of others has come from my case. I have posted before about high platelet
Category: Uncategorised

Replies: 8

Last updated: 5 September 2024
Harriet on 27 February 2019

Category: Getting help

Replies: 24

Last updated: 5 September 2024

Tumeric/curcumin
by scuba (Sep 5)

Do a search on your local Amazon site or Holland & Barrett for "Curcumin C3 complex" and you should see several listings.

I am not familiar with some of the labels, so buyer beware. For

by Danmason11 (Sep 4)

Hi all
Came across this post while searching for which Turmeric is best to use. Does anyone know if this is available in the UK? Can only find it on US sites with extortionate shipping cost. Can’t

by scuba (Mar 12)

I buy the formulation - Curcumin C3 complex with bioperine - 1 gram caplets. It's the formulation used in clinical studies.
There are several manufacturers. Do an on-line search and usually you

by jriccoboni (Mar 11)

Hey Scuba what brand of tumeric/curcumin do you take? I think I am finally going to give it a try.
Category: Getting help

Replies: 24

Last updated: 5 September 2024