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Maggi 813 on 1 July 2020

Category: Treating CML

Replies: 21

Last updated: 3 November 2020

Lack of response on Nilotinib
by alexmcpee (Nov 3)

Hey,
No it’s a 3 hour fast 2 hours before meds and 1 hour after is the standard across the board x2 a day 12 hours apart. So yeah my question was is he fasting only 2 hours (which is incorrect

by Zaccar (Nov 1)

Hi ,
I think he means people with digestive problem. Absorption is increased with food intake wich is why we have to fast not the other way. If you wanted to increase absorption with a healthy

by Zaccar (Nov 1)

Hi ,
I think he means people with digestive problems. Absorption is increased with food intake wich is why we have to fast not the other way. If you wanted to increase absorption with a healthy

by alexmcpee (Oct 30)

I am interested in your claim about absorption. You mentioned when you changed from 2 - 3 hours you saw drops. I am on this TKI and the standard is to fast for 3 hours not 2 by default x2 times
Category: Treating CML

Replies: 21

Last updated: 3 November 2020
Brett0503 on 18 October 2020

Category: Treating CML

Replies: 15

Last updated: 29 October 2020

BCR-ABL uptick
by David Fitz (Oct 29)

You might be thinking of this one: https://vimeo.com/220445547
I don't have the time to watch it now to check, but the title of that session was "Are we ready for recommendations

by Nimbus2 (Oct 29)

Thank you, David.
I cannot find the appropriate authority now but I have seen a video in which Prof Jane Apperley suggest that those with the b2a2 transcript type experience greater difficulty

by David Fitz (Oct 29)

That's right. The e1a2 RNA encodes p190 fusion protein. b2a2 or b3a2 encode the p210 fusion protein, which is the most common for us lot. c3a2 encodes the even lesser spotted p230 protein which

by Brett0503 (Oct 27)

Good informational video, thanks for sharing
Category: Treating CML

Replies: 15

Last updated: 29 October 2020
Zzyzxuk on 28 October 2020

Category: Uncategorised

Replies: 3

Last updated: 28 October 2020

CML Journey: Week 4
by Nimbus2 (Oct 28)

You may get some early-stage reactions to dasatinib which will not endure. Within a week of starting on dasatinib, I was very ill for several days with vomiting and vertigo. I telephoned my

by Zaccar (Oct 28)

Hey,
I have a similar timeline of diagnosis. Sorry that you had to go trough this. These are probably surreal times for you, It's like being hit by a truck. Hopefully you'll get out of thus

by alexmcpee (Oct 28)

Hi there,
Exactly like you I wanted to put down in words what I was going through and it is a good way to come to terms and offload a lot of fear and emotion. I 100% get where you are, I was in the

by Zzyzxuk (Oct 28)

Hope you guys don't mind me trying to put my thoughts into writing here? I feel like I need to write to come to terms with what's happening for me, and don't feel like sharing
Category: Uncategorised

Replies: 3

Last updated: 28 October 2020
Zaccar on 25 October 2020

Category: About CML

Replies: 4

Last updated: 27 October 2020

Do all CMLers eventually become MR4 or better?
by Zaccar (Oct 27)

Trying to know how much I should care about it. Frankly at this point I don't, but yes TFR would be nice. I think we stand a good chance of witnessing ground breaking treatments that will at

by alexmcpee (Oct 27)

I second that mate. The only conclusion I have come to is that these people have moved on with their lives and no longer visit the site much. I am confident they didn’t all die off?!? And

by ColoradoGuy (Oct 26)

I really wish more people would chime in if they have been years on and not MR4. I am 3+ years and only briefly reached MMR. Now just outside at a very low CCyR but really it's like

by David Fitz (Oct 26)

Hi there,
No, not every patient does make it to MR4 or better. And they don't need to - MMR (also called MR3) is generally considered the safe zone but you will also find people who are a little
Category: About CML

Replies: 4

Last updated: 27 October 2020
saifur360 on 25 October 2020

Category: About CML

Replies: 1

Last updated: 25 October 2020

Which test should I do?
by Zaccar (Oct 25)

You should go see a doctor. It's not necessarily linked to imatinib or CML. Because of heavy list of side effects a natural tendancy is to blame everything on TKIs. We can still get sick of

by saifur360 (Oct 25)

Last 7 days I feel pain in my belly. Day by day this pain is increasing. At first I thought its side effect of imatinib (veenat 400) then I stopped imatinib for 5 days. But still now I feel this
Category: About CML

Replies: 1

Last updated: 25 October 2020
Mixail on 25 October 2020

Category: Treating CML

Replies: 0

Last updated: 25 October 2020

Could this be a real new treatment. Thank you.
by Mixail (Oct 25)

Hi all look at this article please and is this look real. Thank you.
https://www.studyfinds.org/leukemia-treatment-targets-protein-in-blood/
Category: Treating CML

Replies: 0

Last updated: 25 October 2020
Lavinia on 18 October 2020

Category: Side effects

Replies: 4

Last updated: 24 October 2020

About to start 100mg desatinib and worried about side effects, exercise and work!
by kat73 (Oct 24)

Lavinia - To your underlying question, does anyone get back to normal and just take the pill and go on as before: Al-l-l-mo-o-ost. Almost normal. The cliche "new normal.

by David Fitz (Oct 20)

Hi Lavinia,
People have different reactions to the medication. Loads of people just pop their pills down, and go on with their life pretty much as normal. They don't tend to post on CML forums

by Simon Allchin (Oct 20)

I’ve tried four different TKIs over the last theee years, including Dasatinib and in all four it was my red blood cell count stayed pretty steady. Red cells transport oxygen around the

by Felix (Oct 18)

Hi Lavinia ,scroll down to Switching from Imatinib to Sprycel under the name Felix ,that's me .It was my experience ,get back to me with any questions will be glad to try and help ,Denise.
Category: Side effects

Replies: 4

Last updated: 24 October 2020
Zzyzxuk on 22 October 2020

Category: Treating CML

Replies: 10

Last updated: 24 October 2020

Pick Your Poison.... (TKIs actually)
by kat73 (Oct 24)

I ditto Felix. Your doc will probably not go for 50 (even though there is evidence from a study to say starting with 50 dasatinib is fine), but you'd probably be OK for several months at

by Felix (Oct 24)

Hi, if your Doc would let you start on 50 mg instead of 100 mg ,pleural effusions could be avoided .But I don't know if he would agree with this dose because you are only just starting off ,Good

by Zzyzxuk (Oct 24)

I'm leaning towards Dasatinib, because the Nilotinib has a higher rate of strokes, and whilst I know you can't predict your side-effects, that is one side-effect I want to avoid...

by alexmcpee (Oct 23)

I just ran the test came back as 2.0174 intermediate... that sounds better than “high risk” lol.
Category: Treating CML

Replies: 10

Last updated: 24 October 2020
cousineg2 on 24 October 2020

Category: Other conditions

Replies: -1

Last updated: 24 October 2020

Are you living with CML and diabetes and maybe also are in TFR?

Category: Other conditions

Replies: -1

Last updated: 24 October 2020
Simon Allchin on 18 October 2020

Category: Treating CML

Replies: 4

Last updated: 21 October 2020

Stem cell transplant advice
by Simon Allchin (Oct 21)

Thanks Alex

by alexmcpee (Oct 20)

Hi Simon,
I also can’t comment but what I can do is wish you nothing but the best for your treatment and I hope one day you can be stable and/or rid of this disease. I am sure you’re in

by Simon Allchin (Oct 20)

BCR-ABL only got below 10% (IS) once but my main challenge has been adverse effects on my liver. Have achieved stability there with the aid of steroids but BCR-ABL back up over 36% (IS). Still

by ColoradoGuy (Oct 20)

I do not have advice regarding that but I am sure a few of the people who have had one will chime in. I think Sandy has a link to her journey for a read. I was wondering what your BCR/
Category: Treating CML

Replies: 4

Last updated: 21 October 2020
fruity2k on 17 October 2020

Category: Uncategorised

Replies: 2

Last updated: 18 October 2020

Upper stomach pain ans spasam
by Simon Allchin (Oct 18)

Hi there
An enlarged spleen is also the symptom I went to my GP about before my CML diagnosis. White blood cell count at that point was a whopping 620 so I was prescribed Hydroxycarbomide, a

by alexmcpee (Oct 17)

Hi sorry to hear of your diagnosis but you’re going to be fine.
If you have a large spleen then yes pain can originate there and will continue to be a little uncomfortable until the spleen

by fruity2k (Oct 17)

Hello , I origanly went to the Gp because of stomach pain , very high up, and like a spasam or twisting feelin going on too, long story short I have cml.
three weeks now of taking imatinib and
Category: Uncategorised

Replies: 2

Last updated: 18 October 2020
israel on 17 September 2020

Category: Uncategorised

Replies: 4

Last updated: 17 October 2020

Can excess iron intake be linked to leukemia and cancers of the lymphatic system?
by fruity2k (Oct 17)

This is my interesting as recently diagnosed with cml . Seven years ago I was severely anemic and was put on various iron supplements that didn't work , so I was sent to st Thomas hospital to

by sbp03 (Sep 22)

Thanks for the article. I also have heard something about such correlation (long term high iron levels ending up in leukemia). I have a hereditary condition called beta thalassemia which reduces the

by MartinZA (Sep 21)

Good day

Thank you so much for this really interesting article. I have a hereditary condition called haemochromatosis which is essentially the opposite of anaemia - it means that my

by argearge (Sep 17)

Thanks for the article, I am going to read it. Like you I am very interested at the cause of leukemia.
Category: Uncategorised

Replies: 4

Last updated: 17 October 2020
mozart8 on 15 October 2020

Category: Drug-drug interactions

Replies: 3

Last updated: 16 October 2020

colonoscopy
by mozart8 (Oct 16)

David, thanks for that, laughed so hard my eyes watered!

by johnw1001 (Oct 16)

Hi
Prior to some prostate procedures I took the dreaded Picolix or similar the day before.I was advised to only eat white bread and very bland food like a little white breast of chicken and poached

by David Fitz (Oct 16)

Hey - yes I have. I didn't have to take any particular precaution.
The concern with all of the bowel prep medicines is that they can cause you to lose a lot of electrolytes including magnesium

by mozart8 (Oct 15)

good afternoon everyone. the dreaded colonoscopy is coming up and the doctor has prescribed 'suprep' for the day-before prep. i always check drug interactions with Sprycel and
Category: Drug-drug interactions

Replies: 3

Last updated: 16 October 2020
Zaccar on 13 October 2020

Category: Treating CML

Replies: 2

Last updated: 16 October 2020

Article posits that non adherance to treatment in CML is widespread! What about you?
by cmljax (Oct 16)

If you cannot have an honest relationship with your oncologist, it's time to find a new one.
Lowering dose requires more frequent testing to insure the disease remains under control.

by alexmcpee (Oct 13)

Personally I respect what the professionals say and if they say this is the dose to take then take it. If for any reason some are tempted to reduce dosage themselves without the advice of those

by Zaccar (Oct 13)

I preface this by saying no judgement please. Do you all respect the posology prescribed by your physician. Did some of you actually decide to avoid the hassle of arguing with your doctors and just
Category: Treating CML

Replies: 2

Last updated: 16 October 2020
argearge on 28 September 2020

Category: About CML

Replies: 5

Last updated: 12 October 2020

Imatinib Sandoz vs Accord
by argearge (Oct 12)

Last week I also had to vomit twice within half an hour of those accord pills. I have informed the pharmacy and they are going to find out what the problem is.

by Nimbus2 (Oct 4)

My consultant did not wish to point to any particular generic but left it for me to raise the matter with the pharmacist. I have to say that the oncology pharmacists were very supportive in

by Nimbus2 (Oct 4)

Patients on the various forums report different individual side-effects from the range of prescribed generics. Pharmacists believe that the differing reactions are caused by the excipients used.

by argearge (Oct 1)

Strange. I had my first dose Accord yesterday, bu no side effects.
I called the pharmacy why I received Accord instead of Sandoz.
They told me there were delivery problems, so it is intented that I
Category: About CML

Replies: 5

Last updated: 12 October 2020
Karinne on 9 October 2020

Category: Uncategorised

Replies: 10

Last updated: 12 October 2020

2 years in TFR with stable pcr!!!
by drarchanaj.adapt (Oct 12)

Keep up the same therapy

by Karinne (Oct 11)

I take “Vitamin K2 180 mcg with D3 5000 IU” combo, every other day.

by drarchanaj.adapt (Oct 11)

Upto 90 ng per ml is safe I think and fights CML

by drarchanaj.adapt (Oct 11)

What is the daily vitamin D supplement dose that you consume please ??
Category: Uncategorised

Replies: 10

Last updated: 12 October 2020
philmc on 20 September 2020

Category: Organising your life

Replies: 11

Last updated: 11 October 2020

Should you / have you told your co-workers you have CML?
by koralia.pappi (Oct 11)

Now this is a very interesting thread, and I can relate to many answers, both pro and against telling co-workers.
If I may share my two cents:
I am a telecom software engineer. I learnt about my

by philmc (Oct 7)

Thanks all for your replies. Your experiences certainly resonate with the kinds of interactions I've had so far.
I've decided not to share it more widely beyond those that need to know. I

by jan0080 (Sep 24)

There is no one answer. While we prefer to be perfectly honest with everyone - CML is an unusual cancer, my Oncologist said it well, If you are going to have cancer, this is the one to get

by alexmcpee (Sep 21)

Well said Martin spot on!!
Category: Organising your life

Replies: 11

Last updated: 11 October 2020
savedbygrace on 9 October 2020

Category: Treating CML

Replies: 6

Last updated: 10 October 2020

New to Imatinib
by Roza (Oct 10)

Many Thanks, your story definitely gives new CMLers like me hope. I know I'm lucky to have great treatment available and to be alive. For many like me, I think a lot of the mental drain in the early

by Tbrand (Oct 10)

5 years on imatinib now and no side effects. After the first 4 months all discomforts disappeared. The medication is killing cancer cells and your body is full of dead cancer cells. Your going to

by Roza (Oct 10)

Hi, I am new to imatinib for three months now and also get bone pain, but mostly in the lower legs around the shins which is manageable around the house but really comes on badly after only a short

by alexmcpee (Oct 10)

I 100% agree that anxiety can exacerbate symptoms and cause new ones. That’s been my experience and I too practice mindfulness and meditation it works wonders for me most of the time. There
Category: Treating CML

Replies: 6

Last updated: 10 October 2020
Jay_b_ce on 25 September 2020

Category: Uncategorised

Replies: 8

Last updated: 10 October 2020

New CML Diagnosis
by Jay_b_ce (Oct 10)

Thank you for the information.
Sorry to hear of the side affects that you experienced on Imatinib but it seems as though Nilotinib suits you well and hopefully will continue to do so.
I have been on

by wshi2001 (Sep 30)

Just give you a quick review. I've been on all three TKIs. For me, Imatinib causes internal bleeding, eyes, mouth and stomach, as well as reduced kidney function. Dasatinib

by Jay_b_ce (Sep 25)

Hi Mark,
Good to meet you on here to and great to hear that you are responding well to Imatinib.
Although I didn't show classic symptoms prior to diagnosis, when looking back I had felt a bit

by MarkP66 (Sep 25)

Hi Jayson
Great to meet you on here. I joined 14 months ago after my diagnosis following a routine blood test. But looking back I had most of the classic signs but put it down to my 55
Category: Uncategorised

Replies: 8

Last updated: 10 October 2020
Sd on 7 October 2020

Category: Side effects

Replies: 8

Last updated: 8 October 2020

Leg aching at night
by Sd (Oct 8)

Yes, it is really muscle pain and not bone pain. I agree about hydration.
Thanks to all for the helpful suggestions.

by alexmcpee (Oct 8)

Yeah I also get the “aches” that you describe not in my legs but my shoulder blades, shoulder and arms. I do find bathing daily in Dr Salts helps massively which might suggest its

by Sd (Oct 8)

This is excellent. I will check out the insurance company to see if they will cover this.

by David Fitz (Oct 8)

Leg massager ... mine is like this. They come in all shapes and sizes. My private health insurance actually paid out for this one near the start of my CML journey over 10 years ago. I still use it
Category: Side effects

Replies: 8

Last updated: 8 October 2020