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Charlawr22 on 3 January 2019

Category: Uncategorised

Replies: 15

Last updated: 11 January 2019

When to start treatment
by Richard42 (Jan 11)

Interesting thread and discussion. I can only offer my own anecdotal experience. I was diagnosed in May 2009, with absolutely no symptoms, following a blood test (which was done for the

by Nimbus2 (Jan 9)

Thank you, Scuba, for providing the various references to the proposition that CML could be in place for 5 to 10 years before the white blood still count starts to rise.
I have been carrying out

by kali (Jan 6)

Hi Sandra!
i read the link you posted. So does it mean that if someone successful stops their TKI with no recurrence of cml that they can still relapse sometime years later?

by Nimbus2 (Jan 6)

Thank you, Alistair.
At the outset of my career, I worked in a microwave radio laboratory which is probably of no great interest. However,1998 to 2001 I worked in an office that was 3 metres away
Category: Uncategorised

Replies: 15

Last updated: 11 January 2019
Riggered on 28 November 2018

Category: Treating CML

Replies: 6

Last updated: 10 January 2019

Had achieved MMR but lost it
by bendicco (Jan 10)

FYI the pharmacist at Sloan suggested I stay away from any mushroom supplements, don’t know to if that is only with Gleevec. You might want to check it out.

by alliswell (Dec 12)

as i said in my thread
maybe this will be useful for other patients , especially if they were just searching just pcr results for a relief like me months before . i will update after every

by Riggered (Nov 29)

Hi Kat,
Yes we sure do love the trend....when its downward. Like you say.....will see what the next couple of PCR's look like.
Onward to .00000

by Riggered (Nov 29)

Thanks Scuba....
I had my Vitamin D level checked about 3 months ago. It was 74 ng/ml
My daily supplement list:

"Liquid Vitamin D3 with K2". 125 mcg D3 (as Cholecalciferol),
Category: Treating CML

Replies: 6

Last updated: 10 January 2019
Alaina on 9 January 2019

Category: Uncategorised

Replies: 2

Last updated: 10 January 2019

Vitamin D and Platelets
by Alaina (Jan 10)

This is motivating. Thanks.

by scuba (Jan 10)

Your Vitamin D level was 13.9 - that is very low (below rickets level). Vitamin D is vital for blood homeostasis. . It's very likely getting your vitamin D elevated is helping your blood system

by Alaina (Jan 9)

During the last 2 and a half years of treatment my platelet count has continued to increase at every 3 month check up. I had my vitamin D level checked in October and the result was 13.9 if I
Category: Uncategorised

Replies: 2

Last updated: 10 January 2019
sg3 on 2 June 2017

Category: Uncategorised

Replies: 7

Last updated: 9 January 2019

Tasigna and the fasting the period
by cmljax (Jan 9)

I have been on Tasigna 150 mg/1x/day (25% of starting dose) for 18 months now and I have never once considered violating the fast period. I must admit that 1 fast period per day is easier than

by RC Kirk (Jan 9)

The NIFO Study: Paper 118149 abstract 235915 0
At this year’s ASH 2018 congress, a poster on the “NIFO Study” (NIlotinib with FOod), conducted by the academic Amsterdam

by grells (Jul 6)

I was diagnosed in March 2016 and have had a great response to Nilotinib. My BCR-ABL is "virtually undetectible" and my molecular response is 4.5. Honestly, I think I have ignored my

by David Fitz (Jun 5)

During the fasting periods, the official guidance on the Tasigna leaflet is:
"Tasigna should be taken twice daily at approximately 12-hour intervals and must be taken on an empty stomach
Category: Uncategorised

Replies: 7

Last updated: 9 January 2019
sandy craine on 5 December 2018

Category: Treating CML

Replies: 27

Last updated: 9 January 2019

20 years since diagnosis
by Richard42 (Jan 9)

Sandy
Belated congratulations on this milestone - I've not been on the forum for some weeks so just seen this thread.
Many thanks for your help and insight over the past nearly 10 years (

by sharon morris (Dec 29)

Hi Sandy,
Huge congratulations on this wonderful milestone!!! You were such an inspiration and a lifeline to me when I was first diagnosed. So much wonderful help in those awful first months. Many

by Felix (Dec 26)

Hi Sandy ,congratulations on your 20 year anniversary you give us all hope.I just read you are from Liverpool I live just over the water on the Wirral.Do you attend RLUH if so are there a few

by MartinZA (Dec 21)

Dear Sandy
I can't believe your incredible story. You are an inspiration to me and a constant reminder that it is possible to live a good and long life with this condition. Thank you
Category: Treating CML

Replies: 27

Last updated: 9 January 2019
JS001 on 1 January 2019

Category: Treating CML

Replies: 5

Last updated: 9 January 2019

Help - Nilotinib fourth line or retry Dasatinib?
by cmljax (Jan 9)

Yes, since 150 mg is the smallest dose available, I take it once a day in the AM, so I don't have to worry about fasting in the evening and at night. Tasigna in in capsule form, so you

by JS001 (Jan 8)

Hi cmljax,
Thanks for your reply. It’s really great news and reassuring to read that you have had such a good response on Nilotinib. I know I am likely to have to switch to Nilotinib in future

by cmljax (Jan 8)

I'm a bit surprised that Scuba hasn't chimed in on this yet, but if he does, he will tell you that there is some evidence to suggest that dasatinib doses less than 100 mg are actually more

by JS001 (Jan 8)

Hello everyone,
I decided to restart on 100mg Dasatinib last Friday in the absence of any conclusive data for previously treated patients. I also felt uncomfortable taking a lower dose than
Category: Treating CML

Replies: 5

Last updated: 9 January 2019
bendicco on 8 January 2019

Category: Treating CML

Replies: 2

Last updated: 9 January 2019

Gleevec has run it's course
by bendicco (Jan 9)

Thanks for your response. Stay well.

by cmljax (Jan 8)

Your options are Sprycell, Tasigna and Bosulif. I only have experience with Tasigna, which has worked very well on my CML. I had a bunch of not so typical side effects that have mostly

by bendicco (Jan 8)

Hi all, so good to have this resource and all your input!
I have had CML for almost 3 years, + for Philadelphia gene, and been on Gleevec 400 daily (generic) aside from an initial week or so on
Category: Treating CML

Replies: 2

Last updated: 9 January 2019
blueyes74 on 13 December 2018

Category: About CML

Replies: 8

Last updated: 8 January 2019

Treatment Free Remission
by cmljax (Jan 8)

We're all rooting for you. Keep us posted please. I haven't been on treatment long enough to try TFR, but hoping I still qualify when the time comes.

by kali (Jan 8)

That is great news! I am always happy to hear with someone can go treatment free! I wish you continued non detectable results!

by DawnD (Dec 15)

Great News Blue!!! Congrats!! I am hoping eventually for the same:):)

by blueyes74 (Dec 13)

I never really had cramp. My toes used to curl up when cold now and again but that was in the early years.
I still get cold hands and often think they're cold when infact they're warm
Category: About CML

Replies: 8

Last updated: 8 January 2019
kali on 8 January 2019

Category: Uncategorised

Replies: 6

Last updated: 8 January 2019

BCRABL1 PCR Test
by kali (Jan 8)

Thanks Scuba for the information. It was interesting to read and learn about this.
Maybe my lack of food actually didn’t cause problems after all and maybe I got some benefit from it.

by scuba (Jan 8)

Yes, a retest is called for ... should be no issue.
On fasting... I am in the middle of a 3 day fast right now. Mostly because I did the opposite during Christmas !!
A theory is that during a fast

by kali (Jan 8)

Thanks Scuba!
So that means I need to ask them to retest. Correct? I have been off my medication for a month due to the pleural effusion. I was also recovering from a either a significant virus or

by scuba (Jan 8)

Contamination. The chain reaction did not work properly (i.e. "not enough nucleic acid").
Category: Uncategorised

Replies: 6

Last updated: 8 January 2019
chrissie on 5 January 2019

Category: Uncategorised

Replies: 2

Last updated: 8 January 2019

Dose reduction
by chrissie (Jan 8)

Thank youx

by kali (Jan 8)

Happy New Year to you too! I hope your plans go well to eventually try for Treatment Free Remission again. Good luck with everything!

by chrissie (Jan 5)

Wishing everyone a happy New Year with a wish for world peace and a cure for CML in 2019.
Just to say that as I have been holding at MR4 since Sept 2016 and on 300mgs imatinib from June 2017 I have
Category: Uncategorised

Replies: 2

Last updated: 8 January 2019
alexmcpee on 8 January 2019

Category: Uncategorised

Replies: 4

Last updated: 8 January 2019

Random night sweat
by kali (Jan 8)

I am glad to read your update about speaking with your consultant and got reassurance about the night sweats. It sounds like you are doing really well. That is always good news to hear. Take care.

by alexmcpee (Jan 8)

An update. I called my consultant and I told him and asked if I could come in for a blood count. He said no you really have nothing to worry about night sweats can occur for a multitude of reasons.

by alexmcpee (Jan 8)

Hi Kali
Many thanks for taking the time to respond to me.
Yes I’ve been under a fair amount of stress for a couple of months and so thought maybe this was a physical response to it.
When I got

by kali (Jan 8)

Hi Alex,
Nightmares can definitely cause night sweats. Intense emotions cause our adrenalin to increase and we can have a fight or fight response in our bodies. Ii have experienced this before with
Category: Uncategorised

Replies: 4

Last updated: 8 January 2019
Nimbus2 on 5 January 2019

Category: Uncategorised

Replies: 3

Last updated: 8 January 2019

Are there any educational courses on the theme of "haematology for non-medics"?
by gof (Jan 8)

David,
it will be really interesting to read more about development of imatinib and read their version of the story.
While reading Emperor of all maladies I was quite shocked after reading how

by David Fitz (Jan 7)

"Magic Cancer Bullet" by the ex-CEO of Novartis, Daniel Vesela, is an interesting read about the development of imatinib.
David

by johnw1001 (Jan 7)

Yes I agree that an essential read is "Philadelphia Chromosome" by Jessica Wapner and I believe is still available on Amazon-if you go this route then dont forget to sign up for CML

by Nimbus2 (Jan 5)

When I became a diabetic, I took a diabetes course with the Open University.
Are there any known haematology courses suitable for academically inclined patients? Alternatively, are there any
Category: Uncategorised

Replies: 3

Last updated: 8 January 2019
kali on 7 January 2019

Category: Uncategorised

Replies: 1

Last updated: 7 January 2019

Forum
by David Fitz (Jan 7)

Hi Kali,
I'm really pleased you find it useful and easy to use. We try to make everything as accessible as possible.
We will be making some upgrades to the site soon, so if you (or anyone

by kali (Jan 7)

I just wanted to say I am appreciative of how well this forum works. It is easy to navigate with topics and follow the threads. The information that is posted on the home page with articles and
Category: Uncategorised

Replies: 1

Last updated: 7 January 2019
alexmcpee on 30 December 2018

Category: Uncategorised

Replies: 21

Last updated: 6 January 2019

CML - Meetup
by martina (Jan 6)

Hi Joanne, it would be lovely to meet up with you and Liz ( if she can make it) around the end of Jan. I work every day until 3pm so the earliest I could make it would be 4pm I'm not sure how those

by alexmcpee (Jan 2)

You are most welcome guys and if you are all from the same area and you meet-up well my job is done :-)
I am getting lots of lovely personal emails and the subject of meeting up defo seems like

by Joanne. (Jan 2)

Hi again Martina.

That is such a coincidence that three of us ladies are from Sligo. Our consultant is obviously a fan of Nilotinib also as we are all on it!

I live near the Mayo border

by fiona vaughan (Jan 2)

Here is a letter I received from Hammersmith Hospital today. I will be going and thought some of you may like to attend too so here is the information
I have attached details of the next meeting, it
Category: Uncategorised

Replies: 21

Last updated: 6 January 2019
BrittBratt95 on 4 January 2019

Category: Children & young people

Replies: 4

Last updated: 6 January 2019

Early cml detection?
by David83 (Jan 6)

Hi Brittbratt,
You’re post caught my eye as you have similarities and also differences to my particular story and I hope I can help you a little bit with your questions.
Firstly I had never

by BrittBratt95 (Jan 6)

Thank you both so much for your responses. The e14a2 type of cml bit really opened my eyes I had no idea there were different types. I thought it was only the Ph negative or positive groups.
I will

by Evelinka89 (Jan 5)

Hi, it is hard to say how early it was cought. I do not know your exact results, but it was probably chronic phase, but no one can say how long the disease has been there since discovered. Yes,

by Felix (Jan 4)

Hello BrittBratt, Where are you being treated as your Haematologist sounds as useless as mine, that's why I am waiting to see a new consultant who just deals with CML.I have never been told
Category: Children & young people

Replies: 4

Last updated: 6 January 2019
Ray Sell on 1 December 2018

Category: Uncategorised

Replies: 21

Last updated: 5 January 2019

BCR-ABL1
by Tbrand (Jan 5)

I have been cutting a 400mg at the score line for a year now because I’m on 600mg. I contacted my pharmacy to get their take on it. I have read about the contents coming into contact with the

by Ray Sell (Jan 5)

Good to hear of someone cutting/breaking these in half that's been doing it for years. I've read both ways on internet.
Thank you for your reply Ray

by Ray Sell (Jan 5)

Scuba thank you. FYI, I'm taking magnesium, k and d as you suggested. I'm sleeping much better. The VA system is broken. I've went outside the system to another

by RC Kirk (Jan 5)

No need to cut, just break it at the score line in the middle. I've been doing it for years, not a problem.
Category: Uncategorised

Replies: 21

Last updated: 5 January 2019
Dustylloyd on 5 January 2019

Category: Getting help

Replies: 0

Last updated: 5 January 2019

Taking nilotinib
by Dustylloyd (Jan 5)

I work regular nights and take my medication (nilotinib)at 4am and 4pm, as for my energy levels at 61 I feel even if I didn’t have Cml you will slow down, but after 4years I am eternally
Category: Getting help

Replies: 0

Last updated: 5 January 2019
David on 18 December 2018

Category: Uncategorised

Replies: 8

Last updated: 3 January 2019

National Shortage of Imatinib?
by blueyes74 (Jan 3)

If anybody is running low i have 200 x100mg of generic Imatinib I don't need. I stopped taking them last year as i'm going for TFR.

by r06ue1 (Dec 26)

It is never a supply or shortage problem, it is always a money problem.

It costs a little over $100 US to produce an entire years supply of the medicine. The medicine can be

by chrissie (Dec 21)

Hi David
I had a H@H delivery of imatinib 100mgs yesterday evening and they sent me enough for 10 days at 300mgs per say. I had phoned them earlier, after seeing your post and was assured I would be

by David (Dec 19)

Many thanks for all your replies.
The problem may be linked to the possibility of a no deal Brexit, see here: https://www.bbc.co.uk/news/health-46597425
Category: Uncategorised

Replies: 8

Last updated: 3 January 2019
Justine on 29 December 2018

Category: Uncategorised

Replies: 10

Last updated: 2 January 2019

Achieved MMR after 21 months
by Vijay Kumar Verma (Jan 2)

Cograts Justin, i'm 1.016@18 months.dose increse from 400 to 600 mg imatinib

by Gitel (Dec 30)

Thank you, and everyone, for posting that being a turtle is just another pattern of living with CML. It was such a relief to read these posts. One forgets that being in a minority is OK. I

by Justine (Dec 30)

Denise my numbers went down slowly and then hovered around 1% for a while. It did seem to go up once or twice but we have had to switch labs a few times, and doc said it could be lab variations. The

by MartinZA (Dec 30)

Congratulations Justine! I'm so glad you got there in the end and can sympathise (it took me 24 months on 100mg dasatinib).
Just an extra bit of hope: A year on from then and I have
Category: Uncategorised

Replies: 10

Last updated: 2 January 2019
Vijay Kumar Verma on 29 December 2018

Category: Side effects

Replies: 2

Last updated: 2 January 2019

Sore gums
by Vijay Kumar Verma (Jan 2)

Hi Greg,
I'm from India,Delhi.vitamins b complex is the answer for sore gums.probiotic may be helpful for diarrhea.

Best wishes

Vijay

by gtboat (Dec 30)

Hi Vijay.
Are you living in Burlington, Ma?
I started the Gleevec 13 days ago and had my firs gum bleed yesterday. A touch of diarrhea this morning. These are my first sign of any side effects

by Vijay Kumar Verma (Dec 29)

Imatinib dose increse from 400 to 600 mg,from 24th dec .sore gums from yesterday.
Category: Side effects

Replies: 2

Last updated: 2 January 2019