Early Results of Lower Dose Dasatinib (50 mg Daily) as Frontline Therapy

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Long-Term Outcome Of Nilotinib 400 Mg Twice Daily In First-Line Treatment

Considerations for Successful Treatment-free Remission

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David Fitz on 22 May 2018

Category: Uncategorised

Replies: 1

Last updated: 22 May 2018

PinnedNew joiners: your account must be verified before you can post messages
by David Fitz (May 22)

Due to an increased level of spam on this forum I've had to take the step to validate new joiners to this group. I'm sorry I've had to do this, but the level of spam (particularly overnight when I
Category: Uncategorised

Replies: 1

Last updated: 22 May 2018
sandy craine on 30 March 2018

Category: About CML

Replies: 3

Last updated: 5 April 2018

PinnedUK CML Patient Day 2018
by sandy craine (Apr 5)

There will be a link for the webcast. I know last year there were some problems but hopefully, this year there will be more successful links. When the NCRI CML Subgroup finalises the details for the

by andycat (Apr 4)

How do we access the web cast for the meeting in Sept. at Brum?It was a nightmare trying to find the last event there .... no sat nav.... I have cml

by sandy craine (Mar 30)

We now have a confirmed date and place for the 2018 UK CML Patient Day. For the moment the date and place are the only details that have been confirmed.The Agenda and Specialist Speakers will be
Category: About CML

Replies: 3

Last updated: 5 April 2018
Vikita Parmar on 18 June 2018

Category: Uncategorised

Replies: 7

Last updated: 20 June 2018

Newly diagonised
by scuba (Jun 20)

Yes, follow Alastair's advice.

by AlastairC (Jun 20)

The most important thing your dad can do for his CML is to take the prescribed dose of imatinib very regularly. There is every likelihood that his PCR-ABL and his WBC will reduce over a few months.

by Vikita Parmar (Jun 20)

Thank you for the advice Scuba.What about his CML??any advice on that?

by scuba (Jun 19)

Your Dad should drink lots of water which will help reduce his uric acid. His CBC report (BUN and creatinine) should show whether he is chronically dehydrated. My uric acid levels were elevated and
Category: Uncategorised

Replies: 7

Last updated: 20 June 2018
Vics on 20 June 2018

Category: Children & young people

Replies: 1

Last updated: 20 June 2018

Blood test.
by Vics (Jun 20)

Hi guys i have been increasingly poorly through the last few months feeling tired faint and dizzy i have had blood tests that have come back normal. I have no idea what i am looking at but i am going
Category: Children & young people

Replies: 1

Last updated: 20 June 2018
AlastairC on 6 October 2017

Category: Treating CML

Replies: 27

Last updated: 20 June 2018

Imatinib Dose Reduction Starts
by kat73 (Jun 20)

This is terrific! Even if TFR isn't ultimately the result, to prove (at least for yet one more person) that reducing a TKI by half can still maintain an extremely low and safe level is AWESOME

by AlastairC (Jun 20)

All, just back from my appointment, 9 months after reducing from 400mg Imatinib to 200mg.BCR-ABL ResultsMarch 0.000%April 0.001%May 0.000%So happily maintaining PCRU on 200mg. Appointment at end

by AlastairC (May 11)

Hi RichI've not had any issues with other tests since I reduced, but I haven't looked at the creatinine numbers. I'm now seeing the registrar - I am threatening to send my consultant an invoice for

by Richd478 (May 11)

Congrats on your reduction, I have a question I to have been reduced to 200mg of gleevec and have noticed a slight elevation in creatinine clearance in the blood tests, did you have any issues with
Category: Treating CML

Replies: 27

Last updated: 20 June 2018
chris mason on 20 June 2018

Category: About CML

Replies: 2

Last updated: 20 June 2018

Hair dye & imatinib
by David Fitz (Jun 20)

Hair dye is fine - no problem at all. I can't give you any advice on products though!David

by chris mason (Jun 20)

Can anyone tell me if it is safe to use hair dyes?if so which products are the best?i have been on imatinib for 3 months and been worried about using hair dye products.
Category: About CML

Replies: 2

Last updated: 20 June 2018
tiredblood on 6 May 2018

Category: Uncategorised

Replies: 8

Last updated: 20 June 2018

My first blip after 4 years
by tiredblood (Jun 20)

4/30/18 0.050%5/30/18 0.000%6/11/18 0.117% (specimen taken same day as doctor visit and agreement to try dasatinib 20mg/day)6/19/18– still waiting for specialty pharmacy to ship dasatinib! ive

by tiredblood (May 7)

Thanks Louise and Scuba for the helpful info.

by LouiseS (May 7)

Sorry to hear about the blip. I was searching for another article supporting starting sprycel at 50 for libby when I came across this one which I can't work out to copy and paste from my phone but

by tiredblood (May 7)

I was thinking if he mentioned going back to 200mg of Gleevec, I’d ask for low dose dasatinib. What would be the lower dose? it occurred to me this evening that this is about the 6-month mark
Category: Uncategorised

Replies: 8

Last updated: 20 June 2018
scuba on 19 June 2018

Category: Treating CML

Replies: 3

Last updated: 19 June 2018

New dug Miristen targets Leukemic stem cells
by davewell (Jun 19)

This seems really impressing.Looks like thay have not started testing it on human patients yet, alas.Let's hope the good results are confirmed!

by Sid35 (Jun 19)

Thank you Scuba for sharing this. Appreciate it. Lets have our fingers crossed.

by scuba (Jun 19)

https://www.businesswire.com/news/home/20180305005966/en/City-Hope-Study-Published-Nature-Medicine-Reports"City of Hope researchers aimed to find a treatment for CML that was effective enough for
Category: Treating CML

Replies: 3

Last updated: 19 June 2018
tom888 on 14 June 2018

Category: Blood tests

Replies: 9

Last updated: 19 June 2018

TKI and therapy
by tom888 (Jun 19)

After three months of imatinib treatment and a first quantitative count of 0.56% pcr I stopped the drug for 40 days. My last haematological measurements were relatively good! I have no other way to

by Romo (Jun 16)

I dreamed I fell into the dark ocean.Someone threw me a raft.I reject the raft becauseI might die after I’m saved.

by Tbrand (Jun 16)

Everything we do in life has consequences. CML is a mutation in itself. The sample studies are great low hanging fruit for publication but in my opinion a lot of hyperbole. Too many variables. The

by tom888 (Jun 15)

good afternoon
Category: Blood tests

Replies: 9

Last updated: 19 June 2018
Junglecat on 18 June 2018

Category: Uncategorised

Replies: 5

Last updated: 19 June 2018

Advice for newly diagnosed on Gleevec 400mg
by LouiseS (Jun 19)

Junglecat, I too would recommend contacting LLS.org for advice on getting financial aid. I so hope they are able to help you. Also is your medical practice able to help? My husband is on Sprycel and

by Gitel (Jun 18)

You might want to check out the Leukemia and Lymphoma website. It is US based and quite different from this site. However, it may have a path to USA resources for CML. I have never fully

by Junglecat (Jun 18)

Thanks for the reply, Gitel,I have been on SSDI for over 12 years, so I am already on a Medicare policy. Even $700 a month would leave my husband and I penniless, as we too are on a fixed income of

by Gitel (Jun 18)

Hi:i was diagnosed in December 2017, put on Gleevac and was resistant to it and am now on dasatinib, Sprycel. So far it seems to be working, but I will know more in 2 weeks when the BCR ABL
Category: Uncategorised

Replies: 5

Last updated: 19 June 2018
ayaz ahmad magray on 3 June 2017

Category: Uncategorised

Replies: 10

Last updated: 18 June 2018

Help
by Sid35 (Jun 18)

Hi Ahmed,Are you still using this forum? How are you doing? How are your counts now ?RegardsSid

by EvaH (Jun 6)

Hi AhmadIts a very good idea to become your own specialist and reading around in this forum is a great place to start. This is true for any patient but esp if you live somewhere the health system is

by Philip (Jun 4)

Hello, I've been on Sprycel - dasatinib since February of 2009. A lower platelet count is "normal" with Sprycel - dasatinib. I'm down to 50mg of Sprycel and my platelet count

by ayaz ahmad magray (Jun 4)

Thanks david. I m from kashmir here is nt health system so good. I go for treatment to delhi india 800kms from kashmir. Maximum test r nt done here( kashmir)
Category: Uncategorised

Replies: 10

Last updated: 18 June 2018
slindon2 on 28 April 2018

Category: Treating CML

Replies: 13

Last updated: 18 June 2018

CML relapse
by slindon2 (Jun 18)

Hi everyone well unfortunatly after being on Dasatinib for 4 weeks my BCR/ABL has come back as 2.22 up from my last imatinib result which was 1.177.Ive had to wait 3 weeks to get this result

by scuba (Jun 11)

Sid,Your situation and mine are very similar. Consider returning to Sprycel - but at a very low dose (20 mg). Given your history (and mine), your CML is exquisitely sensitive to Sprycel. That is very

by Sid35 (Jun 10)

Hi,I am new in this forum. I can closely relate my case to what scuba explained. Here is my case history-I was diagnosed on September 2017 with PCR 50%.Started with Sprycel 100 MG. Experienced low

by slindon2 (May 15)

Hithanks everyone for your replies.been on dasatinib for a week now. Bit tired in the morning's but i have a cuppa and go and do a yoga session from youtube.i have to say the yoga, which ive been
Category: Treating CML

Replies: 13

Last updated: 18 June 2018
Janerussell on 22 March 2018

Category: Treating CML

Replies: 7

Last updated: 18 June 2018

First time posting
by Sid35 (Jun 18)

Hi Melanie B, How are you doing? I am in US too and currently in almost the same situation. Had to stop Sprycel due to recurring low platelet and anc. Started gleevec. Platelets and anc keep on

by Melanie B (Mar 25)

Jane, so sorry for what must seem like an endless roller coaster ride for you. Totally understand your fear of yet another TKI sending your numbers crashing again. I was on that same roller coaster

by LouiseS (Mar 25)

Hi Jane I am so sorry for the very rough time you are having and I feel guilty for complaining about my husband’s swollen eyes in another post. My husband’s oncologist has been very open and

by EvaH (Mar 24)

I second the suggestion that you should now be seeing some high level specialist in CMLIf you're problems continue and you can get to Ireland, it may be worth your while to see Michel O Dwyer in
Category: Treating CML

Replies: 7

Last updated: 18 June 2018
kpatwardhan on 7 October 2017

Category: Uncategorised

Replies: 7

Last updated: 18 June 2018

Low WBC and platelet count with Imatinib or Sprycel
by Sid35 (Jun 18)

Hi, Are you still using this forum? I was wondering how is your mother doing now and how are the counts? Regards Sid

by AlastairC (Oct 8)

It might be worth asking your GP if there are any historic records of blood tests for your Mum which could provide a pre-diagnosis wbc. All the best to her and you.

by AlastairC (Oct 8)

Hi, My CML diagnosis was in April 2007, just around my 50th birthday, It took me over a year to get a BCR-ABL less than 0.01, which was as sensitive as the hospital which tested could go at

by kpatwardhan (Oct 8)

Could I please ask when were you diagnosed with CML? Thanks
Category: Uncategorised

Replies: 7

Last updated: 18 June 2018
LisaLisa on 6 June 2018

Category: Uncategorised

Replies: 8

Last updated: 18 June 2018

Forum (and CML) newbie
by Junglecat (Jun 18)

Nice to know you. I am also new. I will be starting Gleevec at the end of the week. I also live in the US, am 64 years old and am working as an adjunct professor of English at a local community

by LouiseS (Jun 6)

welcome Lisa ! You might want to check out magnesium to help with the cramps and bone pain. My husband hurt his shoulder and aggravated an old shoulder pain several months ago. He had to have

by chrissie (Jun 6)

Hi LisaWelcome to this supportive and very informative website. I was dx nearly 9 years ago and have been on imatinib since then. The early weeks weren't brilliant - very puffy eyes, nausea, cramps

by alexmcpee (Jun 6)

Yes the musclar skeletal aches are common as is joint pain. Small price to pay as you know for treatment of this horrible thing.I’ve just got back from the pharmacy (UK hospital) to collect my 3rd
Category: Uncategorised

Replies: 8

Last updated: 18 June 2018
Felix on 16 June 2018

Category: Blood tests

Replies: 4

Last updated: 17 June 2018

6 Month BCR- ABL RESULT
by scuba (Jun 17)

Cool - you are well on your way to a zero after the decimal point.

by Chuckster (Jun 16)

CONGRATS! Very happy for you! Chuck.

by David Fitz (Jun 16)

Congrats! That’s a fantastic response. You must be delighted.David.

by Felix (Jun 16)

Hello all you CML ERS ,I hope you are all feeling well and doing ok.Just had my 6 month BCR-ABL test result and it is 0.79%.My first big fat zero before the decimal point so happy and relieved just
Category: Blood tests

Replies: 4

Last updated: 17 June 2018
pai5zg on 15 June 2018

Category: Getting help

Replies: 2

Last updated: 16 June 2018

Running and CML
by cmljax (Jun 16)

Run until you can't run any longer. I started on 600 mg Tasigna almost 2 years ago - first year was pretty rough with multiple side effects, but I never stopped my workouts. I think it's more

by pai5zg (Jun 15)

Hi,I am new here with CML disgnosed on 27.4.2018I was wondering are there any runners here?Running is important part of my life for last 5 years since I was diagnosed with CML , I am not sure
Category: Getting help

Replies: 2

Last updated: 16 June 2018
JacqJohn on 6 June 2018

Category: Side effects

Replies: 8

Last updated: 16 June 2018

Water Retention & Imatinib
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 / JacqI 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 being

by LouiseS (Jun 10)

Hi there I am no expert on water retention but if you search this site, you will find some older posts on this topic. I hope they will help. If you google cancer and Curcumin it’s shown to

by JacqJohn (Jun 10)

Hi Martin, I’m also taking the below:CML/ medication:Imatinib 400mgAllopurinolDiuretics ( going to start soon)supplements to go with CML medication:calciumfolic acidi still take vitamin C daily
Category: Side effects

Replies: 8

Last updated: 16 June 2018
Sid35 on 9 June 2018

Category: Treating CML

Replies: 14

Last updated: 15 June 2018

Consistent Low Counts on Sprycel Moved to Gleevec What to Expect ?
by Sid35 (Jun 15)

Thank you Sharon for your kind words. Praying for the best for both of us.

by taylorsharon (Jun 15)

Sid . stay strong ..i know the feeling it can be overwelming and feels never ending ... things will get better they have to im the same as you my counts have taken a dive and dont want to come bk up

by Sid35 (Jun 13)

Latest CBC shows platelets are down to 47K (from 72K last week), Little drop in all other counts except HCT. I started on Gleevec 300mg three week's back. I am really not sure whats going wrong. My

by Sid35 (Jun 12)

Good article. Thanks Scuba !
Category: Treating CML

Replies: 14

Last updated: 15 June 2018
nigel on 13 June 2018

Category: Uncategorised

Replies: 4

Last updated: 14 June 2018

Generic Imatinib - Cipla brand, information please
by MartinZA (Jun 14)

Hi there NigelI am on a generic imatinib supplied by Cipla South Africa, branded and marketed as Imavec here in South Africa. I'm not sure if this is the same generic that you are asking about

by Kathyp (Jun 14)

Hi, I changed from glivec to a generic brand but soon changed back to glivec , they made me sick most days , headaches and a few other side effects , x

by Romo (Jun 13)

This might be relevant to this discussion.https://www.thehindubusinessline.com/opinion/columns/strengthen-healthcare-with-branded-generics/article24115535.ece Romo

by nigel (Jun 13)

Generic Imatinib. A little help please. England certainly, and I believe the UK have agreed a national contract for Imatinib to be supplied by Cipla of India. Is anyone on this brand already, if so
Category: Uncategorised

Replies: 4

Last updated: 14 June 2018