TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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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: 9 November 2018

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: 9 November 2018
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
mikemoss52 on 2 November 2018

Category: Getting help

Replies: 1

Last updated: 6 November 2018

Needing Advice on Dasatanib Deescalation/Cessation.
by sandy craine (Nov 6)

Hi Mike,
From a brief online search, it seems to me that your dad has had a very good (amazing) response to first-line treatment with dasatinib+HYPER CVAD.
MD Anderson is obviously doing some

by mikemoss52 (Nov 2)

Disclaimer, I am writing for my Father, and he has ALL PH+, but this seems to be a great forum and figured I could hopefully be pointed in the right direction. My Dad has been on Dasatanib
Category: Getting help

Replies: 1

Last updated: 6 November 2018
Nimbus2 on 4 November 2018

Category: Uncategorised

Replies: 3

Last updated: 5 November 2018

CML statistics
by r06ue1 (Nov 5)

Those statistics are pretty accurate for deaths (though a bit low) for the US. In previous years the deaths have been around 25% I believe. You have to remember that many people do not

by Nimbus2 (Nov 5)

I did wonder.
It would also seem that in the USA, a CML diagnosis per person is more than twice as twice likely as in the UK. Is this because the British NHS is poor in detecting CML or that

by cmljax (Nov 5)

Digging deeper into both of the provided links, it looks to me as if the survival statistics are out of date and (hopefully) underestimated.

by Nimbus2 (Nov 4)

The years for the data do not correlate precisely, but the UK and USA statistics in respect of newly diagnosed in a year and deaths in a year differ in proportion.
CML UK:
diagnosed in a year 742
Category: Uncategorised

Replies: 3

Last updated: 5 November 2018
Alaina on 1 November 2018

Category: Uncategorised

Replies: 8

Last updated: 2 November 2018

Vitamin D...Help!
by Alaina (Nov 2)

Thank you for the hyperlinks. Great info.

by Alaina (Nov 2)

It is certainly thought provoking for sure.

by cmljax (Nov 2)

My platelet count at Dx was 749, not unusual for CML. # weeks on 600 mg/day Tasigna and it was all the way down to 136 a bit too slow. For last 20 months it has been between 180 and 220

by scuba (Nov 2)

Alaina,
It is important to note that vitamin K2 is not vitamin "K" . Vitamin K1 and K2 are very different from each other and belong to the family of "K" vitamins because they share a 'quinone'
Category: Uncategorised

Replies: 8

Last updated: 2 November 2018
MartinZA on 29 October 2018

Category: Drug-food interactions

Replies: 2

Last updated: 31 October 2018

Beefeater 24 gin
by MartinZA (Oct 31)

Hi John
Thank you so much for your extremely detailed reply to my post! I so appreciate the time and trouble you have taken to reply to me - I have been able to locate every article you

by johnw1001 (Oct 30)

Hi Martin,
I found your post thought provoking and having just had a disturbed night with cramp as a side effect from imatinib would like to add a few comments Over the 12 years that I have been on

by MartinZA (Oct 29)

Hi everyone
I have been on imatinib 400mg since May and seem to be doing well without too many side effects. Muscle cramps are controlled with tonic water and calcium/magnesium supplements.
Category: Drug-food interactions

Replies: 2

Last updated: 31 October 2018
David Fitz on 23 September 2018

Category: Uncategorised

Replies: 5

Last updated: 31 October 2018

Romo, Romo, where(fore) art thou Romo.
by RC Kirk (Oct 31)

I have a new theory on Romo. He has ghosted us. Boo!!!

by LouiseS (Sep 26)

Hey Romo
I went looking for you on the LLS site but no luck. Your comments always made me smile . What a valuable gift . Please come back here.
Best, Louise

by Justine (Sep 25)

I miss you too, Romo. Hope you will come back and continue posting.

by RC Kirk (Sep 25)

I've found a news report about the Xitarians - http://weeklyworldnews.com/aliens/12225/aliens-cure-womans-cancer.
They know how to cure leukemia and Romo hasn't been cured yet. Ipso facto,
Category: Uncategorised

Replies: 5

Last updated: 31 October 2018
JacqJohn on 6 June 2018

Category: Side effects

Replies: 9

Last updated: 30 October 2018

Water Retention & Imatinib
by kat73 (Oct 30)

JaqJohn - Your course on Gleevec is familiar to a lot of us, including me. I was alarmed at how completely different I felt, almost immediately, on Gleevec. I, too, was given allopurinol

by Barry Leier (Oct 29)

Hi John,
I've been on Gleevec 400 mg. since 2012. I've had a complete molecular response since 2015. Watch your Creatine and eGFR numbers closely. They can be a sign of kidney issues. Going to stop

by tom888 (Jun 16)

With regard to conservative treatment over drugs ... the following can help. Lift your feet above the height of your heart as you lie down.
Exercise your feet. This helps the fluid get better from

by MartinZA (Jun 14)

Hi John / Jacq
I guess we have become like a walking dispensary! We take one thing to control one problem and this causes another problem that needs a different drug. Ah, the joys of
Category: Side effects

Replies: 9

Last updated: 30 October 2018
sathish on 28 October 2018

Category: Blood tests

Replies: 3

Last updated: 30 October 2018

pcr result-.0017 with 56% bcr-abl positive.
by sathish (Oct 30)

Thank you kirk for your reply.i think i just became imatinib resistant.now shifted to nilotinib.

by JohnFromChicago (Oct 29)

Do you have numbers reported like this...

Copies of BCR-ABL per 1000 copies of ABL: 0.33
...this correlated to roughly .04% PCR at least on my test results

by RC Kirk (Oct 29)

Hello Sathish,
Welcome to the CML support group. It's hard to say if your CML is expanding or if your test results might be inaccurate. Have your tests always been performed by the same

by sathish (Oct 28)

hello everyone,im new and this is first post.i was diagnosed when i was 28 years old and was taking imatinib 400 mg.my recent pcr result is .0017 with 56% positive cml presence.is this possible.but
Category: Blood tests

Replies: 3

Last updated: 30 October 2018
Tanya Cuffe on 28 October 2018

Category: Uncategorised

Replies: 4

Last updated: 30 October 2018

CML questions
by Tanya Cuffe (Oct 30)

Awesome Kat,that’s great to hear and thank you:)

by kat73 (Oct 29)

I agree with David. You listed the same troubles I had with Gleevec. Most often, Gleevec people seem to be plagued with muscle and bone pain and cramps, but my complaints were only the

by Tanya Cuffe (Oct 28)

Thank you David,will discuss that with doc nxt month.

by David Fitz (Oct 28)

Tanya,
Sometimes one is better than the other for different people, but both are excellent drugs.
If you have other health issues, that might drive the decision to one or other.
But all
Category: Uncategorised

Replies: 4

Last updated: 30 October 2018
Richard on 27 October 2018

Category: Uncategorised

Replies: 4

Last updated: 29 October 2018

imatinib capsule
by Richard (Oct 29)

Thanks for your reply. These are Cipla, and yes, they are very large: 25mm long, and 7mm diameter. I think that I will try the yoghurt method! However, I have to take about 8 other tablets at the

by Gitel (Oct 28)

I do not take Imatinib, but, I have found huge difficult tablets can be swallowed in a large teaspoon of applesauce. Down they go. I didn’t learn this till I was past 70. Hope this helps.

by chrissie (Oct 28)

Hi Richard
I, also, have trouble swallowing large tablets and I have heard that the Cipla 400mgs capsules are enormous. Someone suggested taking the tablet with a spoonful of yoghurt and others have

by Felix (Oct 27)

Hi, some capsules are very large aren’t they ,they are usually brown and have a horrible taste and smell.I have been given a new Imatinib capsule now which is by INTRAPHARM and they are so
Category: Uncategorised

Replies: 4

Last updated: 29 October 2018