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Nimbus2 on 9 March 2019

Category: Uncategorised

Replies: 15

Last updated: 24 March 2019

"Cannot move back to imatinib from second generation TKI"
by Philiptibbs (Mar 24)

If you work outside watch out with Tasigna. I can't take Tasigna because I work outside in the sun and it gave me very bad rashes and sun burn. i had to wear 70spf sunscreen and find long sleeve

by Job Guerra (Mar 21)

Just learned (on lls) that MartinZA did move from Dasatinib to Imatinib. What kind of numbers are you seeing for mutation analysis to be considered? I jumped from just above 0.1 to just above 1.0

by scuba (Mar 21)

Make sure you consider vitamin K2 and D3 together for arterial health.

by cmljax (Mar 21)

Thanks Scuba - I am going to have this conversation with both my GP and my oncologist and see what they say. I already do all the other stuff you suggest plus 2 miles per day 5 days a week on
Category: Uncategorised

Replies: 15

Last updated: 24 March 2019
Ontasigna on 23 March 2019

Category: Drug-food interactions

Replies: 2

Last updated: 24 March 2019

Tasigna : Diclofenac (oral, Gel)
by Ontasigna (Mar 24)

Thanks John. Appreciate your thoughts and suggestions

by johnw1001 (Mar 23)

Diclofenac should be fine to take with tkis but beware that there have been cases of severe stomach bleeding without warning so my GP told me so it is usually prescribed with a PPI -proton pump

by Ontasigna (Mar 23)

Hi all,
Has anyone tried taking diclofenac either oral or gel or spray to get relief from pain when on Tasigna.
I did check on drugs interaction site. It showed minor interaction.
Have you tried
Category: Drug-food interactions

Replies: 2

Last updated: 24 March 2019
Paul Packham on 22 March 2019

Category: Uncategorised

Replies: 2

Last updated: 22 March 2019

Living with cml
by Paul Packham (Mar 22)

Hi, I was on 100mg , was shaking all the time, then a month later the dose was dropped off to 50mg, the doctor says I'll get some side effects but I didn't think my eyes would get swollen, the

by Job Guerra (Mar 22)

Hello. Have you're side effects gotten better and are you meeting milestones? If you are then possibly reduced dose may help.

by Paul Packham (Mar 22)

Hi everyone,

I was diagnosed with chronic myeloid leukaemia in August 2018 was put on distinib, had a lot of side effects eyes swollen and ears, blurry vision , Moody , what else have I got
Category: Uncategorised

Replies: 2

Last updated: 22 March 2019
scuba on 21 March 2019

Category: Uncategorised

Replies: 0

Last updated: 21 March 2019

Trisomy 8
by scuba (Mar 21)

Anyone exhibit chromosome abnormalities such as trisomy 8 ? Anyone who is MMR or PCRU?
Just curious if most people who have put CML into remission (PCR <0.1%) still have any chromosomal
Category: Uncategorised

Replies: 0

Last updated: 21 March 2019
scuba on 10 March 2018

Category: Food & fitness

Replies: 3

Last updated: 21 March 2019

Shitake mushrooms
by scuba (Mar 21)

Just had a bunch (shitake mushrooms) tonight! I have them in fits and spurts.
Sauteed gently in a bit of butter and then tossed in with broccoli. Seasoned with a bit of olive oil and apple cider

by EvaH (Mar 20)

Hilarious....I had a reaction to undercooked shitake mushrooms, rare but it does happen. Thought I was developing shingles!!
I´m pretty sure I´ve eaten shitakes before, *maybe* it had

by Romo (Mar 10)

Wouldn’t it be funny if it only worked if you had to
...eat the mice to get the affect.
The mice becomes the vaccine.
Would you eat the mice with Shitake mushroom and a cream cheese sauce?
I

by scuba (Mar 10)

If you like Shitake mushrooms - eat up!
https://www.cancertherapyadvisor.com/fact-sheets/cancer-ahcc-fact-sheet/...
Category: Food & fitness

Replies: 3

Last updated: 21 March 2019
Mike1523 on 12 March 2019

Category: Side effects

Replies: 7

Last updated: 20 March 2019

Side effects
by EvaH (Mar 20)

Have you checked for other causes? Obviously TKIs are the prime suspect but low B vitamin levels might also cause fatigue/brain fog

by Ray Sell (Mar 16)

Hey Mike I was diagnosed Aug 2016 and started with 600mg Imatinib. Jan 2019 was lowered to 400mg. I do feel some better, but have to pick my battles. Ditto what everyone is

by Justine (Mar 14)

Hi Mike, I have had similar experience to yours. Fatigue is persistent, and absolutely does affect my ability to think clearly. Dx April 2017 -- almost 2 years! -- and on 400 mg Imatinib ever since

by kat73 (Mar 12)

The fatigue you describe is very familiar to almost all of us. For me, it was far worse on Gleevec than on Sprycel. I finally got my energy back after dropping another med I was on (
Category: Side effects

Replies: 7

Last updated: 20 March 2019
Isla D on 14 March 2019

Category: Uncategorised

Replies: 4

Last updated: 20 March 2019

Shingles and TKIs
by EvaH (Mar 20)

Ive been on 500mg valacyovir daily since I got CML in 2016
It messes with my digestion a bit but otherwise it does its job. Sorry about the shingles...thats not really a fun type of herpes to have

by Harriet (Mar 17)

hi i had a really severe herpes simplex outbreak and my doctor prescibed the same and here in Norway they cross reference all meds for interactions, take it,i have known several people who have not

by Isla D (Mar 14)

Thanks very much John for taking the time to research and reply.
I think the post you are referring to might be: https://www.cmlsupport.org.uk/thread/8243/shingles
My GP did suggest I get the

by johnw1001 (Mar 14)

I googled "Valacyclovir and Glivec" to see if there any known drug interactions and some are cited from FDA in USA but the numbers of patients involved seem to be small.I also googled
Category: Uncategorised

Replies: 4

Last updated: 20 March 2019
Ontasigna on 20 March 2019

Category: Food & fitness

Replies: 1

Last updated: 20 March 2019

Tasigna and Cough
by sorin real (Mar 20)

I'm on Tasigna, too.Generally , I eat a lot of curcumin and bee products and I do not really have cold problems.

However, when it happens, I take for cough raw honey. Buckwheat honey is the

by Ontasigna (Mar 20)

Hi there,
I am finding it difficult to avoid people with cough. However, due to pollution, pollens and changing weather cold and cough are inevitable.
How do you all combat cough. What cough
Category: Food & fitness

Replies: 1

Last updated: 20 March 2019
Felix on 10 February 2019

Category: Drug-drug interactions

Replies: 4

Last updated: 20 March 2019

Antibiotics Raised BCR ABL
by Felix (Mar 20)

Thank you Alastair,Doctors insisted that this doesn't happen but it clearly does.So glad you are doing well ,keep up the good work .Regards ,Denise.

by AlastairC (Mar 20)

Hi Denise, sorry to hear you have been through the hassle for no reason. I have had a couple of instances when my BCR ABL has gone up when I had infections; I thought it was a side effect of my

by Felix (Mar 20)

Hello, it seems infection can raise your BCR -ABL But no one would listen to me .Had two small rises when on antibiotics so Docs said I must have Bone marrow test and change to Dasatinib.I

by David Fitz (Feb 10)

I haven't heard of this before, and besides a CYP3A4 interaction (look at drugs.com interaction checker) I can't really see, in my uneducated view anyway, how antibiotics could impact a PCR
Category: Drug-drug interactions

Replies: 4

Last updated: 20 March 2019
Felix on 17 March 2019

Category: Uncategorised

Replies: 9

Last updated: 19 March 2019

One week on Dasatinib and I feel great
by kat73 (Mar 19)

Ah, Denise, of course - I forgot I was on the British site, since I monitor both. Well, come a-cropper is also a Midwestern US saying, or at least it was in my parents' day. (Dayton

by Felix (Mar 18)

Haha ,"come a cropper" ,a phrase us Brits use when we fail badly .

by kat73 (Mar 18)

I started at what was then the standard dose for dasatinib, 100 mg, but I didn't stay there long. I was in transition from one onc to another, one center and lab to another, and I had a

by Felix (Mar 17)

Hi Kat ,did you start on a higher dose and have problems .This is very early days for me on this I am sure I will probably come a cropper at some time with my Luck , Denise.
Category: Uncategorised

Replies: 9

Last updated: 19 March 2019
scuba on 19 March 2019

Category: Uncategorised

Replies: 3

Last updated: 19 March 2019

Vitamin D - interesting results
by Phuong Phuong (Mar 19)

Hi Scuba, Congratulations on your PCR result and thank you so much for sharing your knowledge and experience about Vitamin D.

by scuba (Mar 19)

Might be a good idea to have a lab done so you know for sure.

by onekayaker (Mar 19)

Thanks for the vitamin D info. They were suppose to check my D lvl Feb 27 but when I did not ever hear anything in the portal I sent a email twice and my doctor's nurse called today and

by scuba (Mar 19)

I had my six month PCR check last Tuesday and received results today. In addition, I also had my vitamin D tested and found the result very interesting.
Last September (2018), I had a vitamin D test
Category: Uncategorised

Replies: 3

Last updated: 19 March 2019
chrissie on 18 March 2019

Category: Uncategorised

Replies: 2

Last updated: 18 March 2019

Vertigo
by chrissie (Mar 18)

Thanks for your reply, David. No other weird sensations - and I didn't think I was getting any real side effects from imatinib either. Have an appt with GP on April 1st ( bad date) and I'll

by David Fitz (Mar 18)

Hi Chrissie,
Isn't it always hard to know what could be drug related, and what is just something unrelated?
Have you noticed any other issues with your ears? Ringing or persistent buzzing

by chrissie (Mar 18)

4 1/2 years ago, exactly 5 years after my diagnosis of CML, I badly broke my upper arm and started having mild dizzy spells. These spells have continued since then and have got worse recently
Category: Uncategorised

Replies: 2

Last updated: 18 March 2019
Ontasigna on 16 March 2019

Category: Treating CML

Replies: 6

Last updated: 18 March 2019

HLA typing : SCT
by scuba (Mar 18)

Davids reference on HLA is good and explains it very well.
Given your blast percentage (borderline AP), you should consider switching to dasatinib right away. Nilotinib (tasigna) works similar to

by Ontasigna (Mar 18)

Thanks David. I understand it is pretty complex subject.
Another doubt - I had, i got my Bone marrow slides reviewed at other hospital. The report shows mine as CML-CP (8% BLAST). However my current

by David Fitz (Mar 18)

I am no expert in HLA matching. I know that there is a 1/4 chance of a sibling being a full HLA match (my sister is, I am fortunate).
HLA matching is pretty complicated. Testing is usually

by Ontasigna (Mar 17)

Hi David/Sandy/Scuba. Appreciate your inputs
Category: Treating CML

Replies: 6

Last updated: 18 March 2019
r06ue1 on 27 February 2019

Category: Treating CML

Replies: 2

Last updated: 18 March 2019

CML Drug Prices in the US - Update for 2019
by r06ue1 (Mar 18)

Basically what we have is a cartel, owned by a few wealthy families who are siphoning money from everyone else like leeches.

by scuba (Feb 27)

It is an outrage and this is what is truly wrong with the government-pharmaceutical industry complex. I am all for a new discovery benefiting from patent protection in order to cover the R&D

by r06ue1 (Feb 27)

Insurance company paid $7422.98 to Teva (Israeli company) for the generic brand of Imatinib.

This is a complete outrage, everyone that has private insurance in America should be
Category: Treating CML

Replies: 2

Last updated: 18 March 2019
saifur360 on 14 March 2019

Category: About CML

Replies: 3

Last updated: 17 March 2019

Chronic myeloid leukaemia
by saifur360 (Mar 17)

Thank you very much for your kind response. If my diagnosis is correct, can it be turn CML to AML? And what is the main cause to turn from CML to AML?

by Bill Miller (Mar 16)

Yes. It just happened to me. From October to February I was treated for accelerated CML. All kinds of problems, mostly revolving around pancytopenia, inability to consistently continue treatment,

by scuba (Mar 14)

http://www.nationalcmlsociety.org/faq/disease-progression/can-cml-progre...

by saifur360 (Mar 14)

Is it possible turn from CML to AML???
Category: About CML

Replies: 3

Last updated: 17 March 2019
Job Guerra on 13 March 2019

Category: Children & young people

Replies: 3

Last updated: 17 March 2019

Dasatinib to?
by Job Guerra (Mar 17)

Thanks I will give that a try as I get up around the same time in the morning.

by Naj (Mar 17)

Job,
I take mine at 5:30 am in the morning and so I can do breakfast around 7:00am.
I do not eat anything after 3:00 pm and I do take Tasigna arround 5:00 pm I'm the evening so that I can have

by Job Guerra (Mar 16)

Update. Moving to Tasigna. Any recommendations on best time/routine for taking it? Thank you.

by Job Guerra (Mar 13)

Hello everyone. I wanted to get your thoughts regarding Dasatinib resistance.

I have posted on lls as well so bear with me if you already responded.
Dx 8/17, 64%, started Dasatinib 100mg
Category: Children & young people

Replies: 3

Last updated: 17 March 2019
Ontasigna on 16 March 2019

Category: Treating CML

Replies: 0

Last updated: 16 March 2019

HLA typing : SCT
by Ontasigna (Mar 16)

Hi all,
I got my HLA typing report with my sibling as Donor.
The report shows 6/10 match. Is this an good match for sct?
Category: Treating CML

Replies: 0

Last updated: 16 March 2019
Ade on 15 March 2019

Category: Organising your life

Replies: 1

Last updated: 16 March 2019

Diagnosed with CML 6 months now and still working as a Motorcycle machanic worried about work environment
by Dustylloyd (Mar 16)

Hi ade obviously I don’t know the finances of your business but like you say you were diagnosed 6 months ago and getting used to your Nilotinib medication, just wondering say for the next 6

by Ade (Mar 15)

Hi everyone
I am 51 years old and was diagnosed with CML 6 months ago and treatment is going well on 400mg of Imatinib a day,
My brother a year older than myself died 18 months ago from advanced
Category: Organising your life

Replies: 1

Last updated: 16 March 2019
Fillette on 13 March 2019

Category: Side effects

Replies: 2

Last updated: 15 March 2019

Melanin and Tkis
by Fillette (Mar 15)

Thank you, David. For your considered response. I see there is nothing major to worry about.

by David Fitz (Mar 14)

Hello,
"Hypopigmentation" - lightening of the skin is a known side effect of imatinib. Though it does not affect everyone, a lot of CML patients will report burning in the sun easier than

by Fillette (Mar 13)

Good day everyone.
Before being diagnosed last year, I was a normal brown dark skinned woman. After, starting Glivec, people are literally telling me that I look like a mixed person. There is a Cml
Category: Side effects

Replies: 2

Last updated: 15 March 2019
Gillispie on 14 March 2019

Category: Side effects

Replies: 6

Last updated: 14 March 2019

Vomiting with Gleevec increased dose
by Poppert (Mar 14)

I was recently moved up from 400mg to 600mg too. I had one ”blip” upwards (0.18 at 9 months, 0.47 at 12 months).
They talked about some ”GUS sensitivity” which ”was

by johnw1001 (Mar 14)

I was on 600 mg Glivec for two years as I lost my molecular remission and now with a number of undetectable PCRs,have since December 2018 been back to 400mg thank goodness. I found 600 mg

by scuba (Mar 14)

Yes, if bosutinib had been available to me back in the day, I would have chosen it as my TKI of choice.

by David Fitz (Mar 14)

Though bosutinib is well renowned for rather 'explosive' GI issues for the first couple of weeks! It seems to settle pretty quickly for most people.
I don't have the data to hand, but I
Category: Side effects

Replies: 6

Last updated: 14 March 2019