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Anonymous (not verified) on 17 November 2018

Category: Side effects

Replies: 2

Last updated: 18 November 2018

Imatinib dose reduction
by Anonymous (Nov 18)

Sandy, thanks for your attention. I will discuss it with my doc and wait for the next PCR in order to check if the CMR is similar to the last one. If such happens, then I will reduce the daily dose

by sandy craine (Nov 17)

Hi Silas,
Looking at your molecular response I see no harm in discussing this with your doctor- a trial period to see if a dose reduction would reduce side effects without compromising your

by Anonymous (Nov 17)

Starting from the end of March, I have been taking 400 mg but also facing some side effects (edema and diarrhea).
My q PCR results were MR3 (July) and MR 5,5 (October) and I was wondering if
Category: Side effects

Replies: 2

Last updated: 18 November 2018
autadesiddharth on 15 November 2018

Category: About CML

Replies: 1

Last updated: 16 November 2018

Decitabine therapy during Blast Crisis of CML
by RC Kirk (Nov 16)

Hi Sid,
I found a presentation that mentions when decitabine is used with inecalcitol, it seems to provide better CML stem cell control. Here's the source: https://www.google.com/url?sa=t&

by autadesiddharth (Nov 15)

Hello,
I have posted on this forum a few times regarding my 52yo mother who is currently undergoing treatment for the Blast Crisis of CML. She is currently taking 50mg Dasatinib twice a day(BD). We
Category: About CML

Replies: 1

Last updated: 16 November 2018
jriccoboni on 15 November 2018

Category: Uncategorised

Replies: 1

Last updated: 15 November 2018

Understanding my BRC-ABL blood test
by alexmcpee (Nov 15)

Not to sure but either way that’s a bloody good 3 month response! All I know is the IS (International Standard) is what we go by which states less than 10% at 3 months. So you’re doing great!!!

by jriccoboni (Nov 15)

I got my three month Bcr-Abl blood test back. Meeting with my Doctor tomorrow to discuss the results.
I am a little confused with the results as I see two results.
p210/Abl normalized ratio
Category: Uncategorised

Replies: 1

Last updated: 15 November 2018
American17 on 11 November 2018

Category: Getting help

Replies: 1

Last updated: 15 November 2018

Travel Insurance
by johnw1001 (Nov 15)

Presume you are in UK and if so I have found World First to be willing to cover CML and also most conditions and ages;I was successful in making a claim as well so they do pay out .You will need to

by American17 (Nov 11)

Can anybody recommend a travel insurance company to use for CML
Category: Getting help

Replies: 1

Last updated: 15 November 2018
MartinZA on 12 November 2018

Category: Treating CML

Replies: 2

Last updated: 15 November 2018

Likelihood of adverse events
by MartinZA (Nov 15)

Hi Alastair
Thank you so much for the response - I agree that you are lucky in the UK to have the NHS! (Thanks also for your presentation on the Patient Day - I watched it live here in

by AlastairC (Nov 12)

Hi Martin, a couple of questions. How long have you been in MMR - was losing MMR one of the reasons for your change? Apologies if you have written about that and I've forgotten. Also what dose of

by MartinZA (Nov 12)

Hi everyone
This is a bit of a strange question, and I'm not sure if I should even ask, but any advice would be helpful.
I live in South Africa and am on a private medical aid scheme that has
Category: Treating CML

Replies: 2

Last updated: 15 November 2018
Beulaparthiban on 14 November 2018

Category: Uncategorised

Replies: 3

Last updated: 15 November 2018

My queries about CML
by RC Kirk (Nov 15)

Hello Beulaparthiban,
Welcome to the CML forum.
If you are male, then marrying and having children shouldn't be a problem while you are taking imatinib therapy.
If you are female, then it is a much

by RC Kirk (Nov 15)

Alastair, there is at least one doctor (Samsam) in our forum. But admittedly not a CML doctor.
And to quote the wisdom of Romo,
We are our own doctors.
My Oncologist thinks he’s a genius

by AlastairC (Nov 14)

Hi,
The people on this site are not doctors. We are patients who have had CML and share our experience and knowledge gained over many years for some of us. I hope we can help, but you and your

by Beulaparthiban (Nov 14)

Hello Doctor

1.Can a person with CML( on IMATINIB 400 treatment) is possible to proceed with marriage?

2. How long the tablet should be taken?
Category: Uncategorised

Replies: 3

Last updated: 15 November 2018
David Fitz on 11 November 2018

Category: About CML

Replies: 4

Last updated: 19 November 2018

UPDATE-UCLH web-based consultation study dates have been extended
by AlastairC (Nov 13)

David the link now works fine.

by David Fitz (Nov 13)

Could you try again now?

by MJP (Nov 12)

Denies access

by chrissie (Nov 12)

David, it's refusing me access to the link
Chrissie
Category: About CML

Replies: 4

Last updated: 19 November 2018
pc on 12 November 2018

Category: Other conditions

Replies: 2

Last updated: 12 November 2018

Lymph nodes on left side of neck
by MartinZA (Nov 12)

Hi there
Your message struck a chord with me because I know exactly what it feels like to experience swollen lymph nodes and the terror associated with possible progression to blast phase. For

by cmljax (Nov 12)

Sorry to hear this. Have you had another PDR since the switch to Tasigna - if so, what was the result. What was your blast count on your last blood test and when was this in relation to

by pc (Nov 12)

i switched to tasigna from imatinib, two months backs as my BCR -ABL results were not going below 10% even after six months. Few months back i had observed swollen lymph nodes at right side of
Category: Other conditions

Replies: 2

Last updated: 12 November 2018
AH1 on 9 November 2018

Category: Side effects

Replies: 2

Last updated: 12 November 2018

Gleevec (imanitib) now changed to generic CIPLA
by chrissie (Nov 12)

Ask your haem to prescrobe 4x100mgs daily as the 100mgs are nice and small and easy to swallow. or, as David says, take with a spoonful of yoghurt.
best
Chrissie

by David Fitz (Nov 9)

Generics are the same as the branded medications. Some of the inactive ingredients may be different, which can cause issue with a very small number of people (e.g. someone lactose intolerant when

by AH1 (Nov 9)

Gleevec was recently changed to Sandoz generic imanitib (as Sandoz is owned by Novartis they have the necessary manufacturing capabilities).
Now this has been changed to CIPLA generic. The
Category: Side effects

Replies: 2

Last updated: 12 November 2018
HKBails on 9 November 2018

Category: Drug-food interactions

Replies: 6

Last updated: 12 November 2018

Imanitib
by chrissie (Nov 12)

I had real foot pain like walking on broken glass for 2 years some time ago. I was taking simvastatin and imatinib. I stopped the simvastatin and the pain went within 3 days. Haven't taken any

by cmljax (Nov 11)

I have been on Tasigna for over 2 years and also on Simvastatin the whole time. I have not noticed any adverse reaction between these 2 medicines. Anyone here on these 2 drugs been told to go

by Richard (Nov 11)

A little background information: I had my first heart attack (MI) at the age of 37 in July 1986, then a 4*CABG at 42 followed by 3 more MIs over the course of the next two years, as the bypasses

by Nimbus2 (Nov 10)

My consultant, upon the pharmacist's advice, directed my GP to move me off Simvastatin onto Pravastatin.
Category: Drug-food interactions

Replies: 6

Last updated: 12 November 2018
jeff asuncion on 19 September 2018

Category: Side effects

Replies: 3

Last updated: 12 November 2018

Skin rashes caused by tasigna. Can anyone advice me how to get rid of this?
by Naj (Nov 12)

Jeff,
I also had severe skin rash after about 4 months of Tasigna. I took Cetrizine 10mg ( antihistamine tablet) and it worked very well . Just one dose of 10mg was enough for me to stop the rash

by American17 (Nov 11)

Hi,

I also have had a reaction to Nilotinib, I get itchy skin and a rash, I am currently taking antihistamines for this and although it does not stop the symptoms altogether it does help.

by cmljax (Sep 20)

Suggest you go see a dermatologist to get a correct diagnosis of what kind of skin rash you have. Tasigna does cause skin issues/problems, but you need to know which one you have to determine

by jeff asuncion (Sep 19)

I am taking tasigna since 2015 and i am now suffering from a severe skin rash problem. At first, i dont take it so seriously coz as my doctor told me skin rash is one of the side effects of taking
Category: Side effects

Replies: 3

Last updated: 12 November 2018
Samsam on 8 November 2018

Category: Side effects

Replies: 4

Last updated: 9 November 2018

Iron deficiency anemia on dasatinib
by Isla D (Nov 9)

Trey’s blog has some interesting information on anaemia too.
http://treyscml.blogspot.com

by Isla D (Nov 9)

Hi Samsam
I’ve been on Sprycel for over two and a half years (50mg per day for last two years, 100mg and 75mg before that). The side effect that affects my quality of life the most is digestive

by Gitel (Nov 9)

I have been on Dasatinib/ Sprycel for over 6 months. This because of resistance to Gleevac. First 100, now 80. I started with iron deficient anemia and have built up my blood to normal through

by Alaina (Nov 8)

Hi Sam. I have never taken dasatinib so I am sorry I am of no help to your questions. I take Tasigna and wanted to ask how long you were on it before developing resistance?
Category: Side effects

Replies: 4

Last updated: 9 November 2018
Raviteja Bandaru on 3 October 2018

Category: Reproductive health

Replies: 7

Last updated: 4 April 2020

Impact of CML on marriage.
by David Fitz (Nov 9)

That is certainly outdated advice. Most doctors, these days, would say it is fine to father a child on imatinib. And the conclusion for the other TKIs is rapidly going that same direction.
I would

by r06ue1 (Nov 9)

Good information here. My wife and I had been discussing having a second child, our first was born two weeks after my diagnosis. The doctors at Seidman Cancer Center recommended that I

by Samsam (Nov 8)

Hi
I was on nilotinib when i had my first child, he is now 16 months and healthy. I have been on dasatinib since 1 year( due to nilotinib resistance), now wifey pregnant with second , she is 13

by Justine (Oct 6)

You all might laugh at me for this, but here is an article in a not-very-impressive "journal" (People magazine) about Bryan Boyle, a professional hockey player who has CML. He is still playing and
Category: Reproductive health

Replies: 7

Last updated: 4 April 2020
Tbrand on 25 October 2018

Category: Uncategorised

Replies: 11

Last updated: 9 November 2018

Alpha lipoic acid supplements
by hannibellemo (Nov 9)

Just saw this post and thought I would share my experience with it. Back in 2010 when I had just started dasatinib after developing liver toxicity on imatinib I noticed I was getting tingling and

by scuba (Oct 26)

Alpha lipoic acid (ALA) impacts the aldehyde dehydrogenase pathway (upregulates). That is its main benefit. It also acts as an anti-oxidant.
https://www.ncbi.nlm.nih.gov/pubmed/23238616
Aldehyde

by Nimbus2 (Oct 26)

Sorry, TBrand. I have come across this substance on other health message boards. Across the Intenet, the various promoters of the product make outrageous and unsubstantiated claims for its

by David Fitz (Oct 26)

Hi,
It's a difficult question to answer as there's really very little proof it could help.
For example, there's a study that suggest it might have sone benefit in a rather exotic leukemia, but
Category: Uncategorised

Replies: 11

Last updated: 9 November 2018
jeffcarroll34 on 25 September 2017

Category: Reproductive health

Replies: 4

Last updated: 8 November 2018

Fathering a child on Dasatinib
by Samsam (Nov 8)

I had hydeoxyurea for 5 days bfo starting tki....i had my kid over a year later and i would think it not safe to father a child while on it

But the turnover time for new sperm is about 3

by ipmaki (Nov 8)

That is great news! I was just wondering for those who may have conceived a child early on in their treatment, have any of you also taken Hydroxyurea during your initial diagnosis? I have heard

by Samsam (Nov 8)

Yup i have a healthy 16 month old boy while i took nilotinib

I have been on dasatinib since a year and now wife is 13 weeks pregnant, so far all baby checks are great😊

by David Fitz (Sep 25)

Congratulations! That is wonderful news for you. For the men, the consensus does seem to be failing down on the side that it is pretty safe to father a child without interrupting your TKI treatment
Category: Reproductive health

Replies: 4

Last updated: 8 November 2018
sathish on 30 October 2018

Category: Uncategorised

Replies: 7

Last updated: 8 November 2018

imatinib resistance.what is the prognosis from now on
by Samsam (Nov 8)

Hi
I was on nilotinib from the start of my diagnosis. My levels went to 0.019 then started rising. My hematologist checked for mutations and i had one which was both imatinib and nilotinib

by RC Kirk (Nov 7)

Sathish, it's very unusual to have a FISH test with a result that high as your PCR result is nearly undetectable. I haven't had a FISH test since my first year of treatment (2012-2013). How

by sathish (Nov 7)

Thank you ma'am for your reply.i was expecting your reply.my pcr was .00017 i.e log 4.5 but my fish report was 40 % positive.so we again went for fish test and the result was 20% positive.my doctor

by sandy craine (Nov 6)

Hi, is your resistance due to an imatinib-resistant mutation? If so do you know which mutation you have?
Even if your clinician has not identified a mutation but feels your PCR results are not
Category: Uncategorised

Replies: 7

Last updated: 8 November 2018
MJP on 7 November 2018

Category: Children & young people

Replies: 1

Last updated: 8 November 2018

0.089%
by RC Kirk (Nov 8)

Mark, that's a really fine result for your six month checkup.
And you're worth every penny, and more!!

by MJP (Nov 7)

A huge sigh of relief last night as I checked my 6 month qPCR results online. Even more so when I realized it was less than 0.1% and not just less than 1%.
$75,000 USD well spent (by my
Category: Children & young people

Replies: 1

Last updated: 8 November 2018
David Fitz on 24 July 2018

Category: Uncategorised

Replies: 15

Last updated: 7 November 2018

Site upgrade: Forum moderators wanted - can you help?
by RC Kirk (Nov 7)

Looks like it's about time to launch those antispam measures. https://www.cmlsupport.org.uk/users/rasel-islam obviously hasn't read the forum guidelines!!!

by David Fitz (Nov 5)

Thank you Dawn. Spam reporting updates are in testing and nearly ready to launch.
David.

by DawnD (Nov 5)

More than happy to help David. Just let me know. Dawn

by RC Kirk (Nov 5)

Thanks for taking out the trash.
Category: Uncategorised

Replies: 15

Last updated: 7 November 2018
DawnD on 2 November 2018

Category: Blood tests

Replies: 9

Last updated: 6 November 2018

PCR versus Fish
by sandy craine (Nov 6)

Hi Dawn,
You might want to give our Q-PCR Primer for Patients a read.... see link below.
Re: cytogenetics/FISH and qualitative PCR testing: (used to confirm the presence of BCR/ABL1 and thus

by DawnD (Nov 3)

Good info David. Thanks so much. So appreciated!

by DawnD (Nov 3)

Thank you RC Kirk for response. So appreciate it

by DawnD (Nov 3)

Scuba, As always, thank you so very much.Great info.
Category: Blood tests

Replies: 9

Last updated: 6 November 2018
Clarannette on 3 November 2018

Category: Side effects

Replies: 1

Last updated: 6 November 2018

Chilblains x CML
by sandy craine (Nov 6)

Hi and welcome,
You need to keep your extremities warm and try to keep the blood flow going- this means massage and exercise might help. Keep warm and try not to expose your skin to extremes of

by Clarannette (Nov 3)

Hello everyone,
New to this forum. :)
I have had CML for about two years and I noticed that I have developed Chilblains. Chilblains is when you are exposed to the cold and/or damp it may
Category: Side effects

Replies: 1

Last updated: 6 November 2018