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sandy craine on 26 July 2020

Category: About CML

Replies: 4

Last updated: 15 September 2020

PinnediCMLf Conversations on CML
by argearge (Sep 15)

Thank you.

by sandy craine (Sep 15)

f you have any questions or need assistance, please email to
stefanie@cml-foundation.org

by argearge (Sep 15)

I did see the webinar from Prof Hochhaus and they said that the presentation would be available on their site after the event. I still cannot find it to watch it again. Did someone have the

by sandy craine (Aug 26)

European LeukemiaNet (ELN) 2020 recommendations for treating chronic myeloid leukemia
Professor Andreas Hochhaus, University of Jena (Germany)
Date: August 28th at 14.00 Central European Time (
Category: About CML

Replies: 4

Last updated: 15 September 2020
David Fitz on 28 July 2020

Category: Uncategorised

Replies: 2

Last updated: 31 July 2020

PinnedHelp CML Support when you shop at Amazon
by David Fitz (Jul 31)

Thanks John! It all makes a difference.
I don't think Amazon Fresh (or Prime Now) counts - just the standard Amazon catalogue, but that's still a lot!
David.

by johnw1001 (Jul 31)

David,
As an avid user of Amazon I have subscribed to this scheme for some time;my latest total contribution to CML is nearly up to £30.The amount of support is quite small but if we

by David Fitz (Jul 28)

For some time, you've been able to support CML Support when shopping at Amazon Smile (https://smile.amazon.co.uk), but you couldn't do this on your mobile until now.
AmazonSmile customers
Category: Uncategorised

Replies: 2

Last updated: 31 July 2020
Zzyzxuk on 22 October 2020

Category: Treating CML

Replies: 2

Last updated: 22 October 2020

Pick Your Poison.... (TKIs actually)
by alexmcpee (Oct 22)

Like you I was “high risk” and was started on Nilotinib. If I’d had the choice I would have picked Dasatinib to avoid the x2 3 hour fasts and having to pop x4 pills a day. I’

by David Fitz (Oct 22)

Dasatinib and nilotinib are similarly effective and are both excellent drugs.
However, you have to fast for 3 hours, twice a day at 12 hour intervals on nilotinib ... and no fasting at all on

by Zzyzxuk (Oct 22)

So today I had the CML diagnosis confirmed, and the good news was no unusual cytogenic weirdnesses other than the standard Philadelphia chromosome.
My 'risk level' though came in as '
Category: Treating CML

Replies: 2

Last updated: 22 October 2020
MartinZA on 16 August 2017

Category: Side effects

Replies: 5

Last updated: 22 October 2020

Benign lymph node swelling resembling lymphoma
by MartinZA (Oct 22)

Dear Louise
Thank you for your message - I'm so happy that this post of mine has been useful to you and your husband, because from what I understand it is extremely rare for patients to develop

by LouiseS (Oct 22)

Martin I was so happy to see this post . My husband has been on Sprycel for three years now ( currently in 60 mg). He discovered an enlarged lymph node and had an ultra sound. Called back for

by LouiseS (Oct 22)

Martin I was so happy to see this post . My husband has been on Sprycel for three years now ( currently in 60 mg). He discovered an enlarged lymph node and had an ultra sound. Called back for

by Tidal-Life (Jan 12)

Thanks for your in depth post, Martin;
I'm starting Dasatinib (in a few days) after 6 months on Imatinib (due to my BCR-ABL & Ph+ still being too high)
I'm shocked (but it doesn't come at a
Category: Side effects

Replies: 5

Last updated: 22 October 2020
tom888 on 22 October 2020

Category: Drug-drug interactions

Replies: 0

Last updated: 22 October 2020

olive leaves
by tom888 (Oct 22)

https://www.hindawi.com/journals/omcl/2014/927619/
Category: Drug-drug interactions

Replies: 0

Last updated: 22 October 2020
Chuckster on 12 March 2018

Category: Side effects

Replies: 16

Last updated: 21 October 2020

OK! Just took my first 100MG Sprycel Pill today
by jan0080 (Oct 21)

When I was taking Sprycel at bedtime, I would occasionally fall asleep and miss a dosage of Sprycel. Missing a dosage of Synthroid is not nearly as large of an error as missing a dosage of

by Maddie (Oct 21)

I am thinking of changing to take omeprazole in am around 8 and then sprycel 50 mg before bed. Does this sound reasonabl ad a good ide

by Maddie (Oct 4)

I have been taking my synthroid at 6 am. Sprycel 50 mg at 7 am. Then I take omeprazole at 5 pm.Before dinner
I am trying to find better timing. My counts were. BCR of

by jan0080 (Oct 4)

I wake up early. I often take my Sprycel at 5 AM and I have an iPhone reminder to take it at 7 AM. I used to take it before bedtime but too often I fell asleep forgetting to take it.
Category: Side effects

Replies: 16

Last updated: 21 October 2020
Brett0503 on 18 October 2020

Category: Treating CML

Replies: 6

Last updated: 21 October 2020

BCR-ABL uptick
by alexmcpee (Oct 21)

Yeah so far bobbing around MMR was on last 2 tests. Just had my 2.5 year test as I test 6 monthly get the result in November (still no mutation report over 6 months now). So we will see I am not

by Brett0503 (Oct 20)

First time I’m seeing both transcripts(e2a2 and e3a2) in my bcr-abl results as my hospital used different lab this time.
Not sure if b2a2 is new or detected now due to a different(more

by Nimbus2 (Oct 20)

You appear to be in the same boat as me. I am bobbing around MMR, which I am assured is satisfactory, but making no further progress.
Do you know your transcript type? I am e13a2 (b2a2)? This

by alexmcpee (Oct 19)

No problem. Same as me on those milestones, things have slowed since reaching CCYR and ironically been stuck on the MMR line. 37 at diagnosis. Tested today myself, doesn’t seem to get easier
Category: Treating CML

Replies: 6

Last updated: 21 October 2020
Kathyp on 20 October 2020

Category: Uncategorised

Replies: 3

Last updated: 21 October 2020

Shielding covid
by alexmcpee (Oct 21)

Yeah I got all that info in the 1st wave but nothing new since the rising rates.

by AlastairC (Oct 21)

Did anyone go the whole hog on shielding? Separate bedrooms, not cooking/eating with the rest of the household, washing the bathroom down after every use etc.? I will continue as I have been -

by alexmcpee (Oct 21)

Personally I am not doing anything above and beyond. And I believe the govt have said we don’t have to shield again which is odd considering infection data is higher (due to more testing

by Kathyp (Oct 20)

Hi all, are any of you shielding again with the covid numbers rising ? I live in Lancashire so we are now in tier 3 ,
Category: Uncategorised

Replies: 3

Last updated: 21 October 2020
alexmcpee on 15 September 2020

Category: Side effects

Replies: 25

Last updated: 21 October 2020

Fatigue fatigue fatigue...
by Kathyp (Oct 21)

It’s awful Alex , I’ve been on glivec for 17 years now and I do have spells of depression Which definitely makes my fatigue worse x

by alexmcpee (Oct 20)

Hi Kathy,
Gosh it is disconcerting. I am starting to wonder if mine is a bout of depression. It pretty much got regular at my last PCR result (which wasn’t bad just not great and I didn’

by Kathyp (Oct 20)

Hi Alex , I’ve suffered with fatigue fir years, it’s awful, my head wants to do things but my body doesn’t, I can go for a walk and then be completely wiped out for days after ! I

by alexmcpee (Oct 15)

Unfortunately I take Nilotinib which requires a morning and evening dose. If I were to switch drugs X1 pill a day I’ll move to take before bed for sure!
Thank you for your suggestion
Alex.
Category: Side effects

Replies: 25

Last updated: 21 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
Lavinia on 18 October 2020

Category: Side effects

Replies: 3

Last updated: 20 October 2020

About to start 100mg desatinib and worried about side effects, exercise and work!
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.

by Lavinia (Oct 18)

Hi everyone,
I’m about to start 100mg of desatinib next week after a recent diagnosis. I am 38 and very into fitness and health. I workout almost daily (running and relatively intense fitness
Category: Side effects

Replies: 3

Last updated: 20 October 2020
Vikram varma on 17 October 2020

Category: Getting help

Replies: 7

Last updated: 19 October 2020

About marriage
by Vikram (Oct 19)

Hii Alastair and Alex...
Post creat by vikram verma..
Not me....
I am vikram kumar....
BUT
Age 28... Taken imatinib...

Situation same.....
Thank for your reply......

by Vikram (Oct 19)

Alastair
Post creat vikram verma. I am vikram

Name age same...
Thank for reply....

by Vikram (Oct 19)

Hello vikram verma....
My age also 28 year old....
I also taking imtinib... (600 mg....reduce dose 600 to 400 mg... last two month 400 mg imtinib dose)
UNDETACTABLE 9 year....
Same situation....

by AlastairC (Oct 18)

Vikram you are taking imatinib. All indications are that it is OK (for men) to have children when taking imatinib. Your CML is unlikely to have any significant impact on your life expectancy. I hope
Category: Getting help

Replies: 7

Last updated: 19 October 2020
Zzyzxuk on 12 October 2020

Category: Uncategorised

Replies: 7

Last updated: 18 October 2020

Just found out... :(
by Simon Allchin (Oct 18)

Everyone’s different but I had four weeks of Hydroxycarbomide to stop white blood count production with no side effects whatsoever, so fingers crossed that you have a similar experience. As

by Zzyzxuk (Oct 17)

So the last four days I've started to have rather a lot of pain on my left side, just where the last rib is. I've read that the hydroxycarbamide might cause 'tummy pain', but I

by alexmcpee (Oct 13)

Glad it went well. It’s natural to blow things up to be worse than they are especially with the unknown.
Yes I was and like many started on Hydroxy for about 3 weeks high wbc of 330 platlettes

by Zzyzxuk (Oct 13)

OK - things have definitely changed from when I -last- had a biopsy, which hurt a great deal.
Have just had it done this afternoon, and you all are right, it wasn't too bad with the entonox and
Category: Uncategorised

Replies: 7

Last updated: 18 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
Maggi 813 on 1 July 2020

Category: Treating CML

Replies: 17

Last updated: 17 October 2020

Lack of response on Nilotinib
by wshi2001 (Oct 17)

I am also on Tasigna. My own experience is the effectiveness of this TKI is largely dependent on how well it is absorbed. When I changed fasting time from two hours to at least three

by Maggi 813 (Oct 6)

Hi. I have been given Dasatanib and my BCR ABL is now below 1. I am coping with the new TKI Thank you for asking me

by Praa (Oct 6)

Hi maggi,
What abt your bcr/abl now, which tki you are taken..
Thank

by Maggi 813 (Jul 23)

Yes Thank you Sandi. My doctor prescribed both. I’m grateful for everyone’s help. I am waiting to see the doctor soon and will come back to you then if I am still concerned. Maggi
Category: Treating CML

Replies: 17

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
Ray Sell on 9 September 2020

Category: Treating CML

Replies: 27

Last updated: 13 October 2020

Switiching from Imatinib to sprycel
by David Fitz (Oct 13)

Hi Ray,
That sounds sensible. Ideally you want to see a CML specialist, or at least someone who deals with a large number of CML patients and is up to date with treatment. We see, too often, CML

by Ray Sell (Oct 12)

Thank you David, I’ll research that one
My oncologist now wants to send me to Portland Oregon OHSU For evaluation. Being the only VA oncologist in Boise ID and many patients, I think this Dr

by David Fitz (Oct 12)

Hi Ray,
I don't think I've ever heard of a patient juggling two TKIs at once. You normally find that someone will end up with one that works for them, but doesn't cause too severe side

by Ray Sell (Oct 12)

Update. Due to irregular heart rate I had to stop Dasatinib Oct 10. Started happening daily. Oct 11, only 1 episode, Oct 12 and 13 no episodes so far. Now back to Imatinib.
Category: Treating CML

Replies: 27

Last updated: 13 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