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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I agree the questions asked by most insurers are disappointingly out of date and raising the profile of our condition is a good thing.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
sg3 on 24 October 2017

Category: Side effects

Replies: 3

Last updated: 2 February 2018

Dasatinib and headaches
by LouiseS (Feb 2)

Hi there
My husband is on 100mg Sprycel. He finds the key to avoiding headaches is to drink lots of water ( at least a gallon a day) . The days he forgets he tends to have a headache in

by Tidal-Life (Jan 23)

Yes, I have the same Headaches, only started with Dasatinib a bit over a week ago (switched from Imatinib due to lack of effect on ABL)
I take my 100mg in the early evening on nearly empty stomach (

by davewell (Oct 24)

Hello.
I am also on dasatinib, and when diagnosed I started with the 140mg dosage, taking my pill at 1 pm.
Invariably, at 4:30/5pm the headache used to hit me. It was mostly in my temples area.

by sg3 (Oct 24)

Has anyone got any advice how to deal with the daily headaches.?
My friend was initially on Imatinib but wasn't progressing enough,but side effects manageable. Then he changed to Nilotinib and
Category: Side effects

Replies: 3

Last updated: 2 February 2018
alroder on 30 January 2018

Category: Side effects

Replies: 7

Last updated: 2 February 2018

Nauesous after almost 3 years
by AdamJ (Feb 2)

I have also experienced nausea from Sprycel. It started for me after about 1 year occurs occasionally about 2 hours after I take my pill. Normally this is not too long after I have gone to sleep.

by scuba (Feb 1)

Below is a link to the pharmacology of Sprycel:
https://www.rxlist.com/sprycel-drug.htm
Elimination
The mean terminal half-life of dasatinib is 3 hours to 5 hours. The mean apparent oral

by loafer (Feb 1)

Having been on 100mg Sprycel for 14 months I continued with the nausea and blah days, I found these side effects last approx 6-8 hours for me (Trey or Scuba indicated Sprycel has a 5 hour life or a

by scuba (Feb 1)

Getting nauesous from Sprycel would be very unusual and not listed as a side effect. Perhaps something else is the cause.
I take mine just before retiring and with magnesium taurate (125 mg).
Category: Side effects

Replies: 7

Last updated: 2 February 2018
Amit on 29 January 2018

Category: Uncategorised

Replies: 5

Last updated: 1 February 2018

Nails
by Sue2 (Feb 1)

When I was first diagnosed, I was put on Gleevec. After a few months, my fingernails fell out and my toenails got very hard. I switched to Sprycel, and my fingernails grew back.

by David Fitz (Jan 30)

I hadn't really thought about this, but I have noticed faster and thicker growing fingernails in recent years. I didn't think of a CML / TKI reason ... just noticed it. Interesting others are having

by Amit (Jan 30)

There seems to be some correlation but I guess that will also come and go just like all the other side effects.

by Olivia (Jan 30)

Mine crack much more easily and I have to keep them very short. And yes, I think they are a little darker, but not enough for anyone else to notice. I hadn't thought about it until now!
Category: Uncategorised

Replies: 5

Last updated: 1 February 2018
Carolinemb on 20 January 2018

Category: About CML

Replies: 6

Last updated: 31 January 2018

Melanoma / CML
by cmljax (Jan 31)

I am the member who found the research on Niacinamide (actually my dermatologist found it and recommended it to me). To complete the story, the skin cancers I got were squamous cell and there

by AlastairC (Jan 29)

I believe flu jabs for those of us on TKIs are very important. The nurse practitioner at my GP is rigorous in making sure I turn up, and over this winter I have not had the level of flu/cold

by sandy craine (Jan 28)

Hi Caroline,
regarding skin cancers and Vitamin supplements. There is a member of this forum who developed non-melanoma skin lesions after starting therapy for CML - this is not thought to be

by Justine (Jan 21)

No supplements but I do try to eat well, mostly lean protein and vegetables. I have been on 400 mg Gleevec since day 1, going back and forth from brand name to generic because of insurance demands.
Category: About CML

Replies: 6

Last updated: 31 January 2018
Rebecca Bonnell on 12 November 2016

Category: Food & fitness

Replies: 7

Last updated: 30 January 2018

Extreme Fatigue with CML and the drug Imatinib
by Carolinemb (Jan 30)

Thanks for replying Sandy x

by sandy craine (Jan 30)

This list is personal to me... so it depends on what you personally need - generally I try to take the following Vitamins and minerals on a daily basis:
Vitamin C in the form of ascorbic acid powder

by Carolinemb (Jan 29)

Hi Sandy,

just wondered what the vitamin b complex is you take? And what other supplements you take?

Thanks Caroline

by EvaH (Feb 7)

Thanks....lot of info I didnt know there! Esp on citrus fruits and cranberry :-o
Your story got me wondering, I'm now 42 and was diagnosed last year. I have some savings and though some work
Category: Food & fitness

Replies: 7

Last updated: 30 January 2018
Melanie Preece on 14 January 2018

Category: Side effects

Replies: 2

Last updated: 22 January 2018

New and confused
by T and M (Jan 22)

Hi Mel,
Very sorry to hear about your mum. The first few months can be rough, especially when you have other medical issues.

My husband was diagnosed 3 months ago and has had some

by David Fitz (Jan 16)

Hi Mel,
That sounds really tough for your mum, and I am sure difficult for you too.
Stiffness and aching are common enough complaints, and in most people do subside after a while. Perhaps it takes

by Melanie Preece (Jan 14)

Hi all I’m new to this my darling 75 year old mother has been recently diagnosed with cml and has been taking imatinib for about a month now she didn’t feel well before hand but I’ve seen her change
Category: Side effects

Replies: 2

Last updated: 22 January 2018
T and M on 21 December 2017

Category: Getting help

Replies: 7

Last updated: 22 January 2018

Diagnosed with CML in September, 2017
by T and M (Jan 22)

Thank you so much for such a thorough response! I would have responded soon but he was airlifted up the road yet again with a UTI/kidney infection.
Since then they have performed a cystoscopy

by LucyandMark (Dec 30)

Hi Michelle and Tim. We're on that same journey with you! Mark was diagnosed late November 2017, just a few days before his 47th birthday. So sorry to hear of the UTI complications and your long

by ColoradoGuy (Dec 22)

Sorry I replied to your post in Sandy's reply as opposed to here. Please see reply below as we were diagnosed pretty much at the same time.

by ColoradoGuy (Dec 22)

Hello I too was diagnosed around the same time. Late August 2017. A week before my 37th birthday. My wbc is low on last checkup. 2.8 which is not in the normal range.

I don't think I have
Category: Getting help

Replies: 7

Last updated: 22 January 2018
cct121 on 19 January 2018

Category: Blood tests

Replies: 9

Last updated: 21 January 2018

Fluctuating Log Reduction results
by Justine (Jan 21)

I neglected to mention that I have been on 400 mg Gleevec since day 1.
Take care!

by Ellie Regina Grey (Jan 21)

Hello there,
My diagnosis was also in December 2016, with CML % count so high that even the lab commented: "unable to provide accurate number". Let's not talk about my white blood counts!
Funny,

by cct121 (Jan 21)

Thanks for the information pamphlet David!
Justine, that’s roughly the same trend I followed in the first year. It does look like you’re heading on a good recovery trend!!:)

by Justine (Jan 20)

These are my results. My tests are done in a lab in New Jersey, USA.
7 April 2017 date of dx
BCR/ABL1 of b3a2 Type: 59.08% International Scale Ratio: 49.0364%

6 July 2017 3
Category: Blood tests

Replies: 9

Last updated: 21 January 2018
shebako on 19 January 2018

Category: Uncategorised

Replies: 2

Last updated: 19 January 2018

Help
by shebako (Jan 19)

Many thanks. I had lost close to 2kgs weight before diagnosis and i have also maintained my kgs ranging 61 - 63kg in my life initially.
Apparently i just wished to add a little more.
I thought of

by David Fitz (Jan 19)

Hi there, and welcome!
Lucky you! No side effects is fantastic, and does not mean that the treatment isn't working. Some people are just lucky, others unlucky! When you think about it, it's natural

by shebako (Jan 19)

Hi am new here,am shem.

I have been using glivec close to one and a half months but i do not experience side effects.Is it normal?

For weight gain... i am 9.5 stones and would want to
Category: Uncategorised

Replies: 2

Last updated: 19 January 2018
JacqJohn on 10 January 2018

Category: Blood tests

Replies: 2

Last updated: 19 January 2018

Low WBC and sensitivity to TKIs
by AlastairC (Jan 19)

Hi John. Low WBC on imatinib has been my experience since I was diagnosed in 2007.
I always had low wbc, first investigated in the 1980s when I had a testicular cancer. (it is likely that the

by sandy craine (Jan 14)

Hi John,
your overall white cell count is lower than the normal ref count but given you are being treated with TKI therapy (and so recently diagnosed) your white cell count will be lower than

by JacqJohn (Jan 10)

Hi all,
ive been diagnosed with CML back in Sept 2017. Was first put on hydroxyurea then started on Nilotinib. However after a week into Nilotinib, my liver function test went up very high
Category: Blood tests

Replies: 2

Last updated: 19 January 2018
Carolinemb on 17 January 2018

Category: About CML

Replies: 2

Last updated: 18 January 2018

Wbc in urine analysis
by Carolinemb (Jan 18)

Thank you David, very kind of you to research that for me, I appreciate it..

by David Fitz (Jan 18)

Hi Caroline,
It's not something I've heard before, to be honest.
As far as I know, blood cells in urine is usually either a UTI issue or a kidney issue. Following a thought that the CML itself might

by Carolinemb (Jan 17)

Hi,

just wondered if anyone has had high white blood cells & / or microscopic amount of blood found in urine whilst having this condition? I’ve just been diagnosed with cml and wondered
Category: About CML

Replies: 2

Last updated: 18 January 2018