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loafer on 21 February 2018

Category: Uncategorised

Replies: 2

Last updated: 21 February 2018

Latest PCR
by David Fitz (Feb 21)

Congratulations. Right on the cusp of MMR!

by scuba (Feb 21)

Actually - Dasatinib (Sprycel) may actually help/facilitate bone formation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3087319/
I suspect poor healing may be more to diet and genetics. Vitamin D

by loafer (Feb 21)

So I just received my latest PCR, 0.134 IS, down .048 since 11/2017 now the slow downward spiral starts, I am living on 100mg Sprycel and doing ok with it.
I do have a question 6 months prior to the
Category: Uncategorised

Replies: 2

Last updated: 21 February 2018
Sandrea on 19 February 2018

Category: Clinical trials

Replies: 1

Last updated: 21 February 2018

A new drug on the horizon?
by sandy craine (Feb 21)

Hi Sandrea,
Yes this TKI is akin to ponatinib in that it targets the 'gate-keeper' multi-drug resistant mutation T315i. The number of patients who carry this mutation at diagnosis is very small, but

by Sandrea (Feb 19)

"Sun K706 is a novel tyrosine kinase inhibitor, intended for the treatment of chronic myelogenous leukemia (CML). While currently available oral drugs like Imatinib (Gleevec®), Nilotinib (
Category: Clinical trials

Replies: 1

Last updated: 21 February 2018
Lucas on 19 February 2018

Category: Food & fitness

Replies: 3

Last updated: 20 February 2018

Lipase rollercoaster
by Lucas (Feb 20)

Thank you, David and Sandy. i read that paper last year, when my lipase started to elevate. Funny thing is that the patient with crazy levels, even in lower dose, still have high lipase. I'm talking

by sandy craine (Feb 20)

Hi Lucas,
David's link to the paper on elevation in pancreatic enzymes experienced by some patients who are treated with nilotinib, is a very informative read. Thanks David- I have put this on

by David Fitz (Feb 19)

Hi Lucas -
I presume you found this paper? Seems like the issues you have are, if not common, quite possibly linked to nilotinib..
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791949/pdf/

by Lucas (Feb 19)

Hey, guys! Hope everybody's fine! I just want to share my lipase history with you. Well, since january/2017 i'm having problems with high lipase, and amylase. Sometimes very, very high, like four
Category: Food & fitness

Replies: 3

Last updated: 20 February 2018
dadbags on 20 February 2018

Category: Uncategorised

Replies: 0

Last updated: 20 February 2018

helping thyself
by dadbags (Feb 20)

romo--hope ur doing good--1000%u as a patient must take part in your own healing process--diet-exercise-mental alertness&awareness-u cant say JESUS,GOD,MOHAMMED,BUDAH--WHY ME--U have to get off
Category: Uncategorised

Replies: 0

Last updated: 20 February 2018
dadbags on 16 February 2018

Category: Uncategorised

Replies: 2

Last updated: 17 February 2018

reduction in dosage
by Romo (Feb 17)

I believe all this.
Take part in your own Doctoring. And keep on living.
It’s not easy but winning ain’t easy. If it was, losers would win.
Not far behind you. 66 yo old here.
I still

by Isla D (Feb 17)

Thank you for sharing that Steven! Very inspiring!!!!

by dadbags (Feb 16)

hi nigel&sandy--well as u know they reduced my gleevac to 200mm from 600mm-great results-all my functions r normal--liver,kidney,etc---also NO MORE ANEMIA-no more gout-no more RBC problems-WBC-
Category: Uncategorised

Replies: 2

Last updated: 17 February 2018
Amy James on 16 February 2018

Category: Uncategorised

Replies: 4

Last updated: 17 February 2018

Please help
by Romo (Feb 17)

The day to day fluctuations of blood results even if out of normal range, to a degree
are not alarming. One time I had blood work done many years ago and my Dr. called
me in to discuss my

by Libby (Feb 16)

I was recently diagnosed and my WBC was 330, so 6.7 is fine. Your platelets, at 388 are within normal, as the high end is 450.

I would cut out fatty, processed foods, and see how that

by scuba (Feb 16)

On the face of it, you almost certainly do not have CML, but only a FISH/PCR test would be definitive.
When CML takes hold, red blood suffers. You have no signs of anemia, in fact, your red blood

by RC Kirk (Feb 16)

Doesn't look like CML to me, but I'm not a doctor.
What does your doctor make of your recent blood work?
Category: Uncategorised

Replies: 4

Last updated: 17 February 2018
Raviteja Bandaru on 13 February 2018

Category: Reproductive health

Replies: 3

Last updated: 19 November 2018

Can I get married and have kids with CML
by Romo (Feb 15)

You can’t eat grapefruit.
So if your wife serves you grapefruit
your marriage may be over.
Romo

by Raviteja Bandaru (Feb 15)

Thank you very much David. Your reply gave me a new hope and link you shared is very much helpful.

by David Fitz (Feb 13)

Hi Ravi,
Hello and welcome. Your questions are very sensible ones and fortunately for you, your CML and treatment ought not to interfere with your plans for your life.
Though CML is genetic,

by Raviteja Bandaru (Feb 13)

Hi , I'm Ravi 25 years old from India. I got diagnosed with CML 1 year ago and I'm taking imatanib since then. Now I'm thinking of getting married. Can I get married without any issues and can I
Category: Reproductive health

Replies: 3

Last updated: 19 November 2018
sandy craine on 13 February 2018

Category: Uncategorised

Replies: 1

Last updated: 13 February 2018

Link to archives of now defunct old LLS CML Forum
by scuba (Feb 13)

Hi Sandy,
Thanks for welcoming us to this forum. It is very natural and easy to communicate, and search for threads from years ago. Sandrea's capture of our old LLS forum threads is a huge

by sandy craine (Feb 13)

Sandrea, a member from the US LLS forum and a new member here has posted a link to the archives of the 'old' LLS forum. As members here may miss this link (Sandrea's post is quite a long way down on
Category: Uncategorised

Replies: 1

Last updated: 13 February 2018
sonica on 8 February 2018

Category: About CML

Replies: 2

Last updated: 11 February 2018

Dosage of Tasigna
by sonica (Feb 11)

Thank you Admj for your response. 5 days in I don't vomit I have other symptoms. I have talked with someone from a support group here in Sydney and I am more and more accepting my situation and see

by AdamJ (Feb 8)

I am no expert, but if this is happening only 3 days in, I would head back to the doctor and find out if you can reduce your dose for a short time and see if your body adjusts to the new medication

by sonica (Feb 8)

Hello I have started Tasigna (600 mg) 3 days ago. On the 3rd day I vomited just before taking the morning dose. Not knowing anything jet about the side effects except for the brochure that came with
Category: About CML

Replies: 2

Last updated: 11 February 2018
RC Kirk on 9 February 2018

Category: Blood tests

Replies: 7

Last updated: 10 February 2018

Question about starting Sprycel and Labs
by David Fitz (Feb 10)

When I said "what's going to really radically change" I meant in my particular case of going from 100mg to 70mg of dasatinib. Seems a pretty safe change that wouldn't warrant weekly monitoring.

by scuba (Feb 10)

"Realistically, what's going to really radically change?"
In one week, my neutrophils dropped from 1.2 to 0.3 - dangerously low. I had to have a drug break until my counts recovered which took weeks

by LouiseS (Feb 9)

Kirk I think you should at a minimum have a blood test every 2 weeks if not weekly for the first 6 weeks. I believe Sprycel is a much more potent drug than Gleevac. Also it will help your

by David Fitz (Feb 9)

I suppose it's different everywhere. I dropped from 100mg to 70mg of dasatinib, so increased PCR tests from once a quarter to every six weeks. I don't think weekly, or even monthly monitoring would
Category: Blood tests

Replies: 7

Last updated: 10 February 2018
Walt1955 on 8 February 2018

Category: Side effects

Replies: 4

Last updated: 8 February 2018

Tasigna side effects
by chevyflame (Feb 8)

Hi Louise,

You're are very lucky to have a receptive oncologist. My previous oncologist was very resistant to questions and research. I did extensive research concerning an eye issue (diffuse

by LouiseS (Feb 8)

My husband has been on dasatinib for 4 months now. He has had some of the symptoms you describe your husband is experiencing. He felt like his heart was beating really loudly in his head but this

by cmljax (Feb 8)

I started on 600 mg/day Tasigna in October 2016. I did not have flushing effect or the pulse in my eyes and ears or the joint aches. The head hurting could be folliculitis - I had that

by Libby (Feb 8)

I am on Dasatinib, but I had the "heart beat in the ear" thing. I think this is due to low platelets, as mine has all but disappeared as my platelets have started to go back to a better
Category: Side effects

Replies: 4

Last updated: 8 February 2018
vonnie on 7 February 2018

Category: Uncategorised

Replies: 2

Last updated: 8 February 2018

bone marrow
by David Fitz (Feb 8)

Hi Vonnie,
This very much depends on the doctor, the hospital etc.
The more "modern" approach is not to take bone marrow samples unless there is a need. However some doctors continue

by Romo (Feb 8)

Witch doctors, Voodoo shaman, Chiropractors, PHD’s, and Acupuncturist.
I avoid all these professions.
Romo

by vonnie (Feb 7)

do all doctors carry out regular bone marrow tests if blood tests are showing normal
Category: Uncategorised

Replies: 2

Last updated: 8 February 2018
David on 5 February 2018

Category: Uncategorised

Replies: 5

Last updated: 6 February 2018

Travel insurance again!
by Irishmammy (Feb 6)

Hello all, I am a regular traveller and my child who has CML travels with me.
I heard about this crowd on bbc tv as the founder had breast cancer herself and she wanted to set up a company to help

by johnw1001 (Feb 5)

Hi All,
As suggested if you call World First you will experience reasonable and sensible medical screening and a reasonable loading for the CML condition;forget AXA and all the other insurers that

by cdw5000 (Feb 5)

Hi,
I agree the questions asked by most insurers are disappointingly out of date and raising the profile of our condition is a good thing.
I removed the stress of your annual predicament (excluding

by Richard42 (Feb 5)

Completely agree. This always irritates me when I have to renew my medical declaration - I know what they will ask me and the questioner always apologises when I point out that the questions
Category: Uncategorised

Replies: 5

Last updated: 6 February 2018
Guru on 6 February 2018

Category: Side effects

Replies: 3

Last updated: 6 February 2018

Nephrotic syndrome with Imatinib?
by Isla D (Feb 6)

Sorry you've had to go through this experience with your kidneys as I can only imagine it must be distressing. Fantastic response though reaching MR5!
TKIs can effect kidneys in some people. There

by Guru (Feb 6)

Hi,

Thank you , Will consult our consultant on the dosage.

by AlastairC (Feb 6)

Hi,
I don't know anything about nephrotic syndrome, but you clearly have a good understanding of that.
I was put on 200mg of imatinib rather than 400 about 9 months after diagnosis due to very low

by Guru (Feb 6)

Nephrotic syndrome with Imatinib?

I want to know from this forum if Imatinib can cause Nephrotic syndrome and if I can stop Imatinib temporarily

I will explain my case in detail.

I was
Category: Side effects

Replies: 3

Last updated: 6 February 2018
BHPenfold on 6 July 2012

Category: Uncategorised

Replies: 2

Last updated: 6 February 2018

Diagnosed with FIP1L1-PDGFRA+ CEL
by BHPenfold (Feb 6)

Dear all,
I've not checked in for some time, but I thought I would just update you on progress. As I have said before CEL is very similar to CML (different gene) , but there are no support groups

by sandy craine (Jul 7)

Hi and welcome to this forum,
I have one question... why only 100mg imatinib when first line CML is treated with 400mg standard?

I have not knowledge of CEL or HES but if imatinib is indicated

by BHPenfold (Jul 6)

Hi All,
I was diagnosed with CEL (FIP1L1-PDGFRA+) 2 months ago. While not CML, it is very similar and there are no support groups that I have found in the UK.
My mother had AML, and my daughter ALL
Category: Uncategorised

Replies: 2

Last updated: 6 February 2018
ABHUK on 2 February 2018

Category: Treating CML

Replies: 9

Last updated: 6 February 2018

Decision about coming off Imatinib (Glivec)
by David Fitz (Feb 6)

Hot off the press this afternoon, it's 0.05% on the international scale.
David

by scuba (Feb 6)

David,
What is your current PCR level?

by David Fitz (Feb 6)

Very much still a spring chicken ... or hedgehog, by the looks of your profile picture!
I'm a couple of years younger than you, and am keen to reduce or eliminate my TKI consumption. I'm

by ABHUK (Feb 6)

Romo,
Thanks but actually I have just turned 40 years old, so I would still consider myself a spring chicken!!
I have lots to think about.
Category: Treating CML

Replies: 9

Last updated: 6 February 2018
VioS on 6 February 2018

Category: About CML

Replies: 0

Last updated: 6 February 2018

Generic Imatinib Side Effects
by VioS (Feb 6)

Hello, I was diagnosed in 2013 with CML, treated with Glivec until june 2017, with good response Bcr-Abl ratio 0.027, and then treated with generic imatinib (Glenmark) still in MMR after 6 months
Category: About CML

Replies: 0

Last updated: 6 February 2018
FiremanRock on 26 January 2018

Category: Uncategorised

Replies: 7

Last updated: 6 February 2018

Life with CML but I'm not ill!
by sonica (Feb 6)

Dear Luisa,
Thank you for sharing. I have just started my treatment of Nilotinib today and I am not as strong as I was 7 years ago facing a breast cancer. Your experience gives me motivation.

by Luisa (Feb 4)

Hi all,
I haven’t posted for a long time but I would like to share my experience of living with CML without feeling ill. I was diagnosed 5 years ago at 57 rather by chance as I had no symptoms apart

by Libby (Jan 29)

I was diagnosed on 14 October with WBC of 330 and, as you say, a spleen the size of America - It was so big it was sticking out the side!!.
I was told that I'm at the severe stage of Chronic

by sandy craine (Jan 27)

HI Andy.... welcome to this forum and website. We are a solely patient run group so we know exactly what you are experiencing - you are not alone! As Nigel has already said..... although you
Category: Uncategorised

Replies: 7

Last updated: 6 February 2018
tiredblood on 3 February 2018

Category: Uncategorised

Replies: 4

Last updated: 5 February 2018

1/4 dose & maintaining PCRU :)
by EvaH (Feb 5)

YAY!!!

by AlastairC (Feb 4)

Brilliant!

by scuba (Feb 3)

Very nice!
Very nice indeed!

by LouiseS (Feb 3)

That’s great news :) Know it’s not been an easy journey. Hope you are feeling better on reduced dose.
Best louise
Category: Uncategorised

Replies: 4

Last updated: 5 February 2018
lloyd152 on 1 February 2018

Category: Organising your life

Replies: 2

Last updated: 2 February 2018

Life Assurance
by lloyd152 (Feb 2)

Hi David,

Thanks for your reply. Yes I am living in the UK. Thank you for forwarding that thread, I'll investigate some of those options and will let everyone know if I come across anything

by David Fitz (Feb 1)

Hi Lloyd,
Are you in the UK? You'll probably find it night on impossible to buy life assurance that covers CML, and even if you do the cost is likely to be prohibitive.
However, you might be

by lloyd152 (Feb 1)

Hi all,
I have been on Dasatinib (Sprycel) for roughly 9 years and am just about to buy my first home. I'm struggling to find life assurance as I didn't already have any when I was diagnosed (I was
Category: Organising your life

Replies: 2

Last updated: 2 February 2018