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vmsantoso on 13 January 2020

Category: About CML

Replies: 5

Last updated: 16 January 2020

Recently diagnosed
by vmsantoso (Jan 16)

Hi Alastair and Kirk,
big thanks to your explanation! It really helps a lot.
No, he didn’t get any allopurinol right now. He got it when taking hydroxyurea, and he really felt the gout in his

by AlastairC (Jan 16)

Hi Vania,
When he starts imatinib, his body will still be fighting the CML, but also getting used to the imatinib and side effects. Like Kirk I was diagnosed by chance before it had really

by RC Kirk (Jan 16)

Hi Vania,
My first thought when I read about his upper stomach fullness was that he may have an enlarged spleen due to the CML. It should probably get better as his blood returns to a more

by vmsantoso (Jan 16)

Hi Kirk,
he’s been taking Gleevec 3 days now, and got a bit fullness in his upper stomach (perhaps it is the side effect ?)
And i saw some progression in his body, like face became a bit red (
Category: About CML

Replies: 5

Last updated: 16 January 2020
Sd on 16 January 2020

Category: Side effects

Replies: 0

Last updated: 16 January 2020

mouth issues
by Sd (Jan 16)

Besides dry mouth, is anyone trying to manage issues with the oral mucosa? Not sores or ulcers, but rough feelings in the sides of the cheeks (as when tasting something bitter). Also some tenderness
Category: Side effects

Replies: 0

Last updated: 16 January 2020
LabNoir on 14 January 2019

Category: Uncategorised

Replies: 12

Last updated: 13 January 2020

T315i mutations and BCAA
by scuba (Jan 13)

You want your vitamin D level to be lower than 100 /ng/ml with 50 - 70 ng/ml ideal for cancer fighting and disease 'minimization' in general. Dorup's work in 2012 documents a "J -

by LabNoir (Jan 13)

X

by LabNoir (Jan 13)

Hi Scuba

1) I think cancer patients need to be on a customized vegan diet. Some things are off-limits. Tofu, beans and nuts contains a lot of BCAA and methionine ( another no-no). Even more

by scuba (Jan 12)

There is much evidence that a 'veggie' diet is anti-cancer:
https://www.huffpost.com/entry/vegan-diet-cancer_b_2250052
A low protein diet forces the body to "autophage" and digest
Category: Uncategorised

Replies: 12

Last updated: 13 January 2020
Karin on 12 January 2020

Category: Side effects

Replies: 2

Last updated: 13 January 2020

Coughing
by Nimbus2 (Jan 13)

Are you taking any other medicines that could cause a cough? I only mention this because I had the same issue and Ramipril proved to be the cause.

by David Fitz (Jan 12)

Have you tried using a humidifier in your bedroom? My children often have a cough, and it really helps them.
You need one suitable for the size of your bedroom. Tiny ones won’t really

by Karin (Jan 12)

I was diagnosed with CML one year ago. (69 yr old female) Have been taking 400mg of imatinib mesylate daily. Side effects have not been too bad and some are easing up. I have developed a chronic
Category: Side effects

Replies: 2

Last updated: 13 January 2020
labros on 11 January 2020

Category: Side effects

Replies: 3

Last updated: 12 January 2020

Transient drop of platelets due to Dasatinib
by Brett0503 (Jan 12)

I has posted the same in the other thread. Not taking the pill before the blood draw made the difference.
https://cmlsupport.org.uk/post/58732

by labros (Jan 12)

Hello Rosiem,
How low are your PLTs in general? What made me try this "experiment" was the fact that some days the PLTs were low (below 75, BUT still above 50) and some others normal (

by Rosiem (Jan 12)

I'm really excited about your post. I am currently on 70 mg Dasatinib and suffer from Myelosuppression and low platelets side effect.
I have an appointment with my consultant this Tuesday

by labros (Jan 11)

I would like to draw your attention to an "unreported" side effect of dasatinib that might affect someone's treatment plan and lead to discontinuation of Dasatinib due to
Category: Side effects

Replies: 3

Last updated: 12 January 2020
cdw5000 on 9 January 2020

Category: About CML

Replies: 11

Last updated: 12 January 2020

Congratulations Chris Harrop
by Nimbus2 (Jan 12)

Hello LabNoir. I could not find the data. The nearest I can get is at the following site:
https://www.hematology.org/Thehematologist/Diffusion/6534.aspx

These data are provided for those age

by LabNoir (Jan 12)

Hi Nimbus
Thank you. I would like to know the relative survival numbers you would have based on stratificaiton of treatment milestone . My understanding is that CMR (old categorization) in the first

by David Fitz (Jan 11)

Cancer Research’s figures for 5 year survival are based on a paper named “National Cancer Intelligence Network. Trends in incidence and outcome for haematological cancer in England: 2001

by Nimbus2 (Jan 11)

I did write to Cancer Research UK concerning the apparent disparity between USA data and UK data. I received eventually a very defensive response. It appears at first glance that the NHS five year
Category: About CML

Replies: 11

Last updated: 12 January 2020
Sonia0609 on 6 January 2020

Category: Treating CML

Replies: 9

Last updated: 9 January 2020

Curcumin
by scuba (Jan 9)

I take 5,000 IU's vitamin D3 one day; 10,000 IU's the next day in winter.
In spring I switch over to just 5,000 IU's every day until fall.
The above is calibrated by vitamin D tests

by JPD (Jan 9)

I know you've answered this before - but what levels of curicumin (and D3 for that matter) are you currently taking? @scuba

by alexmcpee (Jan 7)

Thank you Scuba!
I bought some Curcumin with pepper from Amazon and it has a heart warning on the label and because Tasigna also has a heart warning I was reluctant to take it just in case it caused

by scuba (Jan 7)

I continue to take C3 complex version of Curcumin.
Category: Treating CML

Replies: 9

Last updated: 9 January 2020
Ontasigna on 8 January 2020

Category: Treating CML

Replies: 3

Last updated: 9 January 2020

Nilotnib : Dose reduction
by Ontasigna (Jan 9)

Thanks David. Last 9 months I am in mr4

by VioS (Jan 8)

Helo,
after 1 year and 10 months of tasigna (on 12 december) because of side effects like constipation, prostatitis and tinitus, i reduce my dose to in half, and after a week i stayed 3 days free of

by David Fitz (Jan 8)

Hi,
I wouldn't be concerned about slightly raised levels of white cells. Our bodies produce more of these when we need to fight infections, and around this time of year (in the northern

by Ontasigna (Jan 8)

Hi all,
It's been an year I started off with Nilotnib 400mg BD. My PCr as of 26th Dec 19 - 0.00555
I have appointment with my Doc tom. Can I ask for dose reduction?
My lmyphocytes and esinophils are
Category: Treating CML

Replies: 3

Last updated: 9 January 2020
Carol on 3 January 2020

Category: About CML

Replies: 1

Last updated: 8 January 2020

CML PATIENT CARER meeting at the HAMMERSMITH HOSPITAL 25th January 2020
by Sunny (Jan 8)

Thank you Carol,
sunny.

by Carol (Jan 3)

Patient Support Group Meeting at the Hammersmith Hospital
EVERYONE WELCOME
CML PATIENTS CARER SUPPORT GROUP
CATHERINE LEWIS CENTRE RECEPTION
HAMMERSMITH HOSPITAL
Du Cane
Category: About CML

Replies: 1

Last updated: 8 January 2020
Mike B on 7 January 2020

Category: Treating CML

Replies: 2

Last updated: 7 January 2020

Stay course or try Sprycel dose reduction
by Mike B (Jan 7)

Thank you Kat!
My goal is to hopefully reduce future side effects such as the pleural effusion. I am not so concerned about TFR. If I get there, I get there, but that has never been my main goal.
We

by kat73 (Jan 7)

There is some thinking that less is more with Sprycel. You are at a very safe place after not an unusual span of time getting there. There are studies showing that 50 mg of Sprycel - as

by Mike B (Jan 7)

Could use some reassurance and thoughts.
Diagnosed November 2016. Currently on Sprycel 100mg. Stalled out before on Imatinib and Bosutinib gave liver problems.
MMR Finally April 2019.
April 2019 - .
Category: Treating CML

Replies: 2

Last updated: 7 January 2020
Vikram on 13 October 2019

Category: Blood tests

Replies: 15

Last updated: 7 January 2020

Cbc report
by Vikram (Jan 7)

Thanks for your reply....

by RC Kirk (Jan 5)

Hi Vikram,
The PCR test for BCR/ABL1 is the most sensitive test for PH+ CML. If your PCR score has been undetectable for the past 8 years, then it's likely that your CML will remain

by Vikram (Jan 5)

Any idea...... Please reply....

by Vikram (Jan 4)

Only for information......Perpous......
Last 8 years UNDETACTABLE
CBC REPORT not diagnose cml current time
(1) Fish test born merrow test diagnoses I cml.......???? (last 8 years UNDETACTABLE
Category: Blood tests

Replies: 15

Last updated: 7 January 2020
lilsusie on 4 January 2020

Category: Uncategorised

Replies: 9

Last updated: 7 January 2020

My CML Experience
by Tater1 (Jan 7)

Hi
As others have said, I think your post is very brave. I completely understand the fear and anxiety that come with living with CML and blood draws. I am only 6 weeks into this journey

by lilsusie (Jan 6)

Yes it is an extremely severe phobia. It seems I’m in an impossible situation.
Thanks for the link. I will definitely look into it to see if it’s an option for me.

by David Fitz (Jan 5)

Hi,
This sounds like a very severe needle phobia, indeed. But of course to manage your CML your must be tested properly.
I can completely understand why a doctor would not undertake a blood

by lilsusie (Jan 5)

Thank you for the responses.
I have sought help from various professionals over the years to deal with my phobia and at best, only ever achieved tiny improvements that didn’t impress
Category: Uncategorised

Replies: 9

Last updated: 7 January 2020
Tater1 on 30 December 2019

Category: Uncategorised

Replies: 13

Last updated: 5 January 2020

Neutropenia and Sprycel 100mg
by Tater1 (Jan 5)

Thanks scuba. Your responses mean so much to me. I ask my Dr these questions, and while she does get back to me, the responses are no where near as understandable or complete. I

by scuba (Jan 5)

Not strange at all. Our blood making system responds to signals and availability of "parts". You have been in short supply of neutrophils which triggers other parts of your body to send

by Tater1 (Jan 2)

Just received a call from the nurse that my neutrophils are back at 1.5 but platelets now at 30. Is it strange that one recovers but the other continues to fall?

by Tater1 (Dec 31)

Oh awesome thanks! That really good to know.... that you bounces back from zero but it just took a little while.
Category: Uncategorised

Replies: 13

Last updated: 5 January 2020
Jacqueline Allmark on 3 January 2020

Category: Uncategorised

Replies: 3

Last updated: 5 January 2020

Fairly new diagnosis
by alexmcpee (Jan 5)

Diagnosis is a very scary time. Anxiety can cause night sweets as well as untreated CML. And the meds can cause night sweets I’ve had a couple of bouts over the last 20 months, I told my

by Jacqueline Allmark (Jan 4)

Ok thanks for this I don't drink enough water but I will now .Jacqui

by Felix (Jan 3)

Hi Jacqui , sorry you have had to join our club, are you drinking lots water .Enough to flush out all the dead CML cells and to keep hydrated as this will cause headaches if you don't

by Jacqueline Allmark (Jan 3)

I was diagnosed November last year and have responded to imatinib Recently symptoms such as night sweats and headaches have returned Is this ok or should I get in touch with my haematologist before
Category: Uncategorised

Replies: 3

Last updated: 5 January 2020
ipmaki on 31 December 2019

Category: Blood tests

Replies: 3

Last updated: 2 January 2020

Absolute Neutrophil Bands
by David Fitz (Jan 2)

Flu shot can definitely cause a drop in white cell counts in general, and of course that includes neutrophils. There’s a fair bit of research on Medline about neutropenia and vaccinations that

by ipmaki (Jan 2)

Hi David,
Thank you for the information. I am getting over a flu from about 3-4 weeks ago which turned into a sinus infection. So maybe that explains the low ANC? I just thought there would be a

by David Fitz (Jan 2)

ANC of 0.6 is a little low, indeed. Have you been ill at all recently? Your neutrophil count can be affected by a recent virus, for example.
Neutrophil bands are, to my knowledge, neutrophils that

by ipmaki (Dec 31)

Just curious, I couldn't find any information on this subject in previous posts. I recently had absolute neutrophil bands show up in my CBC (0.4 K/uL) and I was curious what this means. My
Category: Blood tests

Replies: 3

Last updated: 2 January 2020
nathaliek on 31 December 2019

Category: About CML

Replies: 1

Last updated: 1 January 2020

Half tasigna dose
by RC Kirk (Jan 1)

Hello there nathaliek, Welcome to the CML Support forum.
Would you care to elaborate on "Half tasigna dose", I'm not really sure what you're meaning.
Cheers, Kirk

by nathaliek (Dec 31)

Hi!
Category: About CML

Replies: 1

Last updated: 1 January 2020
Justine on 27 December 2019

Category: Treating CML

Replies: 3

Last updated: 1 January 2020

Time for a different TKI or stay the course?
by Justine (Jan 1)

Thank you both for your replies. Happy new year!

by David Fitz (Dec 30)

You’re in MMR - an optimal response. You’re doing just fine!
TFR is not a realistic goal for everyone.
If you really want the fabled “undetected” (7 years later, I’ve

by alexmcpee (Dec 27)

I think you are doing fine. You may never reach undetected not everyone does. The guidelines for mutation testing or a switch of drugs is x2 consecutive upticks. But I bet if you test again you

by Justine (Dec 27)

Hello friends, I was diagnosed April 2017. It took 21 months for me to achieve MMR on 400 mg generic imatinib. I'm still taking IM.
At my last checkup this week at 33 months out, I am still not
Category: Treating CML

Replies: 3

Last updated: 1 January 2020
janita on 26 December 2019

Category: Side effects

Replies: 11

Last updated: 31 December 2019

Nilotinib
by kat73 (Dec 31)

Janita - Something I wish someone had said to me all those years ago when I was suffering like you: "You don't have to feel this bad!" But, strangely, not a single doctor (onc,

by janita (Dec 30)

Hey
all I know at the moment is the side effects are ruling my life!!!! I can’t plan things with my family as I never know how I’m going to feel from one day to the next. Is it normal to

by kat73 (Dec 29)

It's good that you are giving some time to getting used to the med, but keep in mind that, IF things don't get better, bad side effects are a legitimate reason to try a different TKI.

by janita (Dec 27)

Hey Alex
i guess it’s hard to think as well I’ve only been on these meds for 4 weeks ( seems like a lifetime) and need to give my body time to adjust. I’m such a family person and
Category: Side effects

Replies: 11

Last updated: 31 December 2019
Sd on 28 December 2019

Category: Drug-food interactions

Replies: 2

Last updated: 30 December 2019

Pomegranate juice
by David Fitz (Dec 30)

Pomegranate juice can cause problems with TKIs, but you’d have to have a fair amount of it and almost all pomegranate juice you buy actually has a very low % of pomegranate. So it’s

by onekayaker (Dec 29)

i was told no by the pharmacist at MD Anderson. i remark that I thought it was only grapefruit and he said also pomegranate and seville oranges...which is used to make orange marmalade.

by Sd (Dec 28)

Anyone know of any issues with gleevac and pomegranate juice?
Category: Drug-food interactions

Replies: 2

Last updated: 30 December 2019
Mixail on 23 December 2019

Category: Uncategorised

Replies: 13

Last updated: 30 December 2019

Switching meds
by Buzzm1 (Dec 30)

Happy New Year vivbow! Please keep us posted on your PCR readings. Thanks!

by Mixail (Dec 29)

Buzzm1 Thank you for the advice. Have a Happy New Year.

by Buzzm1 (Dec 27)

Mixail, when CML has been at a low level, rangebound or plateaued, or undetected, for a period of a year, or so, as yours has, TKI dosage can safely be gradually reduced without it having an adverse

by Mixail (Dec 27)

Alex . Thank you for the advice.
Category: Uncategorised

Replies: 13

Last updated: 30 December 2019