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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
EvaH on 6 December 2019

Category: Food & fitness

Replies: 5

Last updated: 29 December 2019

Importance of Magnesium video by a Cardio guy
by Nimbus2 (Dec 29)

I purchased magnesium taurate. The package indicates "MAGNESIUM TAURATE" but in small letters shows "Magtein Magnesium L-Threonate, Magnesium Glycinate, Magnesium Taurate". All

by Nimbus2 (Dec 8)

Thank you, Scuba. I cannot afford a laxative effect with the problems that I already have with imatinib generics. I will junk the former when they arrive and I have reordered.

by EvaH (Dec 8)

I need my brain more ;)

by scuba (Dec 8)

A guide to the different Magnesium complex':
http://peoplesrx.com/the-best-kind-of-magnesium-for-you/
Magnesium Oxide is the least expensive and the least absorbed. It is what is used in
Category: Food & fitness

Replies: 5

Last updated: 29 December 2019
Sd on 28 December 2019

Category: Side effects

Replies: 2

Last updated: 28 December 2019

Rash from imatinib
by Felix (Dec 28)

Hi, I used a simple vitamin E cream ,it eventually took the itchiness and redness out ,the little bumps remained but didn't bother me anymore .The whole lot disappeared within days when I

by Aeje10327 (Dec 28)

I think it depends. There seem to be some that do and some that don't. Mine didn't and I was recently switched to Sprycel.

by Sd (Dec 28)

How are people handling the rash from imatinib? Does it ever resolve?
Category: Side effects

Replies: 2

Last updated: 28 December 2019
ThomasS on 26 December 2019

Category: Uncategorised

Replies: 4

Last updated: 28 December 2019

Sprycel-Irregular Heartbeat
by ThomasS (Dec 28)

Thanks kirk. Good article. The cardiologist called and he even said the Sprycel might have something to do with the irregular heartbeat? The knee surgery has been cancelled a couple of times now. I

by RC Kirk (Dec 28)

Here's another article I'd forgotten about.
Case report - Reversible ventricular arrhythmia induced by dasatinib https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4184536/

by ThomasS (Dec 28)

Kirk, thanks for the reply. Interesting article. I'm pretty sure the sprycel had something to do with the irregular heartbeat. I went to the cardiologist today and he said everything is now

by RC Kirk (Dec 27)

Hi Tom,
Here's a link to an article: Cancer Treatment–Induced Arrhythmias
Focus on Chemotherapy and Targeted Therapies
https://sci-hub.se/10.1161/CIRCEP.117.005443
I have
Category: Uncategorised

Replies: 4

Last updated: 28 December 2019
vivbow on 27 December 2019

Category: Other conditions

Replies: 9

Last updated: 28 December 2019

night sweats
by vivbow (Dec 28)

hmmm. I'll check in with my doctor about that. Thanks for the suggestion.

by Buzzm1 (Dec 28)

vivbow, 200mg/day would be easier on your system.

by vivbow (Dec 28)

I have. 4 pills every other day is keeping me n remission. Tried to go off a year ago but it wasn't successful. So I accept my good fortune that this medicine works for me

by vivbow (Dec 28)

Olivia,

thank you. Ive just been living with it, like cramps and edema, and accepting but just thought since I'm new to the Forum that I would check and see if anyone else has this
Category: Other conditions

Replies: 9

Last updated: 28 December 2019
israel on 27 December 2019

Category: Organising your life

Replies: 1

Last updated: 27 December 2019

Cold shower
by alexmcpee (Dec 27)

I’d also add that having CML or any form of cancer can cause depression. This defo effected me for a time and I had massive fatigue, I wanted to sleep all the time, even not long after waking

by israel (Dec 27)

Hi,
Have you tried taking a cold shower to fight off fatigue?
I have never experienced heavy symptoms from TKI, don't blame it for everything negative I feel, but after spending a week of just
Category: Organising your life

Replies: 1

Last updated: 27 December 2019
StewartOC on 9 August 2019

Category: Side effects

Replies: 7

Last updated: 27 December 2019

Bosulif / Bosutinib - Mobility Issues
by alexmcpee (Dec 27)

Hi Stewart!
We met at Kings college for the CML presentation back in the summer and got the tube together if you recall. I am glad that Bosutinib seems to be reducing your BCR, but sorry to hear

by StewartOC (Dec 27)

Hi all,
Just a wee update. My legs and fatigue remain pronounced but otherwise things seem ok. It's pretty frustrating only being able to do one thing a day and falling asleep in the late

by onekayaker (Dec 16)

Hello Stewart,

I was eased into 300mg bosilif after failing on sprycel 50mg. My issue was balance. I was unable to paddle board after starting Bos. and when walking down

by Diane CW (Dec 15)

Hi Stewart
I was diagnosed two years ago and started off on Nilotinib but had to come off because it reduced my platelet count too much. So I have been on Bosutinib for just over a year now, started
Category: Side effects

Replies: 7

Last updated: 27 December 2019
janita on 25 December 2019

Category: Treating CML

Replies: 4

Last updated: 26 December 2019

Newly diagnosed
by Buzzm1 (Dec 26)

Janita, allow me to re-ask part of David's question: What dosage of Nilotinib are you on?
You may be able to reduce your dosage to help reduce the side-effects you are experiencing

by alexmcpee (Dec 26)

Hi Janita
Congrats to you both. A day let alone week prob will make little difference as my doc says. But wouldn’t take the risk regularly even once a month.
I am too on Nilotinib and have

by janita (Dec 25)

Hi
mom in Tasmania Australia I am taking Nilotinib twice a day only been on them for 3 weeks and my levels have dropped dramatically already (yayyy) my dr says I have to give my body time to

by David Fitz (Dec 25)

Hi Janita,
Not taking your meds for one single day won’t cause any issues - but if missed more than one time a month (perhaps less) then it can cause problems. But if you are having side
Category: Treating CML

Replies: 4

Last updated: 26 December 2019
Tater1 on 24 December 2019

Category: Blood tests

Replies: 2

Last updated: 25 December 2019

Medication Hold
by Tater1 (Dec 25)

Merry Christmas to you too! I haven’t had a FISH test since my diagnosis one month ago, but it was 96%.

Thanks for all your support and advice. It means

by scuba (Dec 25)

Your Neutrophils are low, but not dangerous. You should stay off sprycel until your neutrophils rise above 1.0 - 1.2. Your red blood cells are a bit low as well, but I suspect that is your system re

by Tater1 (Dec 24)

Hi everyone! Happy Holidays to you all....
I have been on 100 mg Sprycel for three weeks, and due to neutropenia, I am on a medication freeze until my counts are back up. I do
Category: Blood tests

Replies: 2

Last updated: 25 December 2019
mamodei on 24 December 2019

Category: Uncategorised

Replies: 1

Last updated: 24 December 2019

Winter Thoughts
by alexmcpee (Dec 24)

Hi Maria,
A very nice post. And I’ve read your blog. The early days of CML are hard or at least were for me too. It takes a lot of adjusting and a complete change of perspective.... this was

by mamodei (Dec 24)

I'm a relative newbie to coping with CML, or in my case coping with the drugs since my CML has been easily set back with the medication. This forum has helped me greatly with information,
Category: Uncategorised

Replies: 1

Last updated: 24 December 2019
joansullivan031278 on 21 December 2019

Category: Blood tests

Replies: 1

Last updated: 21 December 2019

Call from Oncologist said beginning stages of CML scared
by David Fitz (Dec 21)

Hi Joan,
Are these figures at the point of diagnosis of CML? If so, they are very low
CML doesn’t run in families. It is genetic in nature, but isn’t passed from parent to child.

by joansullivan031278 (Dec 21)

B2a2 is% 0.115

B3a2 is% 0.097
I'm very scared. What happens next? Cancer runs very rampant in my family but no cml that I'm aware of. Any help is appreciated.
Category: Blood tests

Replies: 1

Last updated: 21 December 2019
mamodei on 20 December 2019

Category: Side effects

Replies: 2

Last updated: 21 December 2019

Chest pain - Sprycel/dasatinib
by mamodei (Dec 21)

Thank you so much for taking the time to put together this list of links. I'll sit down tonight and go through all of them thoroughly as a quick reading shows there is even more

by RC Kirk (Dec 21)

Hi Maria,
I've experienced chest discomfort and weird heartbeats since starting dasatinib. I manage it by going back to imatinib for a while until it feels better. I've had some

by mamodei (Dec 20)

Has anyone had experience with chest pain/pulmonary issues with dasatinib? If so, how was it resolved? What did it feel like? If it was a matter of going off the Sprycel how long
Category: Side effects

Replies: 2

Last updated: 21 December 2019