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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
Phil Poole on 8 February 2013

Category: Uncategorised

Replies: 12

Last updated: 14 March 2019

Stopping Imatinib for one month - Insomnia related.
by Phuong Phuong (Mar 14)

Hi Phil and all
My boyfriend has trouble sleeping too. He has been on imatinib for 9 months. can you guys update your experiences and advice?
Thank you so much

by Phil Poole (Feb 12)

Thanks Vickie, all helpful and things to consider when I go back.
Regards,
Phil.

by Phil Poole (Feb 12)

Hi Tony,
Suggest you go to your GP, and ask for a referral to an ENT at the hospital. If you check online for Benign Positional Vertigo, you will be able to find out much more about it. The ENT

by tony morgan (Feb 12)

Hi phil , can you discribe any of these exercises to me ,very interested as I'm going through a lot of issues with work off for 5 months,reported for being drunk on the job ,sent home for a seconded
Category: Uncategorised

Replies: 12

Last updated: 14 March 2019
mozart8 on 13 March 2019

Category: Drug-drug interactions

Replies: 2

Last updated: 13 March 2019

Dasatinib and antidepressants
by mozart8 (Mar 13)

hello and thank you so much for your response!

by johnw1001 (Mar 13)

I use the article by Haouala et al which appeared in Blood Journal 24 Feb 2011 titled "Drug Interactions with TKIs......." as a source of possible interactions.I have tracked down a

by mozart8 (Mar 13)

Hello and hope everyone is feeling well. I have been taking citalopram for a number of years and will be discontinuing since it interacts with dasatinib and could cause qt prolongation (a cardiac
Category: Drug-drug interactions

Replies: 2

Last updated: 13 March 2019
stefanolucas on 7 March 2019

Category: Treating CML

Replies: 7

Last updated: 13 March 2019

Imatinib&nilotinib failure ! Please advice !
by stefanolucas (Mar 13)

Thank you so much !

by Ontasigna (Mar 13)

Thanks David!

by AnnieKennedy (Mar 13)

Hi - I don't often check or post on here now as I was diagnosed over fifteen years ago. I know that people have high expectations of a rapid response to TKIs and that this is generally the case

by stefanolucas (Mar 12)

Hi David ,
thanks for your response and Yes you did understand good , she doesn’t has any mutations but the Imatinib and Nilotinib didn’t brought her below from 20% BCR-ABL in fast 9
Category: Treating CML

Replies: 7

Last updated: 13 March 2019
Dustylloyd on 10 March 2019

Category: Blood tests

Replies: 3

Last updated: 12 March 2019

Support at work
by johnw1001 (Mar 12)

Hi there,
If you are in the UK then as soon as one is diagnosed with a cancer you are classified as disabled under the Equality Act and employers would be wise to put in place specific measures to

by Dustylloyd (Mar 10)

Thanks David for your reply, it sounds like you work for a caring, understanding company.

by David Fitz (Mar 10)

I'm very fortunate, my employer has been excellent. I had 3 months off at the start, and returned to a 4-day week over the next few months. I never managed to get back to a 5 day week, but my

by Dustylloyd (Mar 10)

I’ve mentioned this subject before and just wondering what support other Cml members get from their employers, I’ve had 19 days off in 2 years and was recently interviewed in a warning
Category: Blood tests

Replies: 3

Last updated: 12 March 2019
Ontasigna on 11 March 2019

Category: Treating CML

Replies: 1

Last updated: 12 March 2019

Tasigna : severe Joint, bone and muscle pain
by johnw1001 (Mar 12)

Hello,
I do not have experience of Tasigna but have been on long term use of imatinib and suffer from the symptoms that you describe;many of the tki s especially if you are on a high dose will

by Ontasigna (Mar 11)

Hi there,
It's been a week I started to get severe joint,bone and muscle pain. I have been on Tasigna 800mg since 21/2 months.
Is this side effect of Tasigna? Will it subside?
Category: Treating CML

Replies: 1

Last updated: 12 March 2019
Naj on 7 March 2019

Category: Blood tests

Replies: 10

Last updated: 12 March 2019

BCR-ABL count started to Increase - Tasigna 300 BID
by Naj (Mar 12)

Scuba,
Thanks for the paper.. I am thinking about Sprycel for some time. I will talk about this with my doctor at some point.

Initially I was hoping I can lower Tasigna to just once a day like

by scuba (Mar 11)

Naj,
Consider switching drugs.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142480/
... only because you prefer not to deal with fasting before or after taking tasigna.
if you switch to sprycel,

by Naj (Mar 11)

Cmljax,
I just had a visit to my oncologist this morning and like all of you guys mentioned on this post, he said I am doing fine . He suggested to be on the same dose for now. I will have next

by cmljax (Mar 8)

If your next PCR improves, you should seriously consider less dose. I reduced from 600 to 450 mg/day when I hit MMR = .1 and my PCR continued to go down. We are all different, but there is
Category: Blood tests

Replies: 10

Last updated: 12 March 2019
Gagan Bansal on 11 March 2019

Category: Blood tests

Replies: 2

Last updated: 11 March 2019

Understanding BCR-ABL1 Quantitative Gene Fusion Analysis
by scuba (Mar 11)

... it also means his father will never die from CML. His results are in the 'noise' of the test - almost indistinguishable from "undetected".

by David Fitz (Mar 11)

Hi,
You can read our PCR Primer for Patients, which will help you learn about PCR tests and how to interpret them.
https://www.cmlsupport.org.uk/node/20097
Your fathers results are very good. Both

by Gagan Bansal (Mar 11)

Hi All,
I need to understand BCR-ABL1 Quantitative Gene Fusion Analysis.
My father got it tested it three time over last three years but i dont understand the parameters defined.
Can some one
Category: Blood tests

Replies: 2

Last updated: 11 March 2019
ponce71 on 8 March 2019

Category: Uncategorised

Replies: 5

Last updated: 11 March 2019

Anyone with these symptoms? Behavioural changes with gleevec?
by David Fitz (Mar 11)

And nothing else with it? Even supplements?
If just imatinib / Gleevec then as you probably have read, depression is a known but unusual side effect. From the small bits of scientific information

by ponce71 (Mar 11)

Tanya thank you for sharing. Hopefully, in this forum, we can learn more from others about the subject and be able to understand the possible changes.
Thanks :)

by ponce71 (Mar 11)

gleevec

by Tanya Cuffe (Mar 9)

Have been on Glieevev for 1 year and half.Have become deeply depressed (as it also put me into early menopause),as well as having changed my former bubbly personality into a somewhat depressed
Category: Uncategorised

Replies: 5

Last updated: 11 March 2019
Phuong Phuong on 10 March 2019

Category: Reproductive health

Replies: 3

Last updated: 11 March 2019

CML and Sperm quality
by Phuong Phuong (Mar 11)

Thanks David and Kirk. The info is so optimistic for male patients.
it is said that the sperm morphology is hard to be improved. We are considering to see doctor for man issue after several months

by David Fitz (Mar 10)

My sperm was "banked" back when I was diagnosed. I don't have any statistics to hand, but there were no particular concerns about quality and I wasn't told that CML could affect it

by RC Kirk (Mar 10)

I don't have any personal experience. My youngest is almost 20 and I started Gleevec in 2012.
Here is a quote from a research study: Impact of Imatinib on the Fertility of Male

by Phuong Phuong (Mar 10)

My boyfriend was diagnosed in may 2018 with cml. He has just got the semen analysis which shows the mobility progressive is 11% (normal is >32%); morphology is 2% ( normal is >4%). Other
Category: Reproductive health

Replies: 3

Last updated: 11 March 2019
Phuong Phuong on 23 February 2019

Category: Blood tests

Replies: 3

Last updated: 11 March 2019

Red blood cell count has been falling down
by Phuong Phuong (Mar 11)

Hi Scuba
How is your breathing? My boyfriend is sufferring shortness of breath that makes me so worried, especially at night. What should he do? Will the breathing come to normal over the time?

by Phuong Phuong (Feb 24)

Thanks Scuba, I feel much relieved. His hemoglobin number is 133, that means near normal.
His doctor also said not very many patients get that such early respond and wait for the test on June to

by scuba (Feb 23)

CML drugs can cause minor myelosuppression (blood counts - particularly platelets, neutrophils and red blood cells). This is normal for many patients. My RBC level, for example, is a near constant 3

by Phuong Phuong (Feb 23)

Hi everyone
please give me advice for red blood cell count falling down:
May 2018(At diagnosis): 3.15
Sep 2018 (after 3 months on Imatinib): 4.95
Dec 2018: 4.59
Jan 2019: 4.23
Feb 2019: 4.15
My
Category: Blood tests

Replies: 3

Last updated: 11 March 2019
AF on 9 March 2019

Category: Treating CML

Replies: 5

Last updated: 11 March 2019

Sprycel Reduction to 20mg After 15 Months
by AF (Mar 11)

Thanks for the reassuring words, Scuba. We will test that option with my husband’s hematologist.

by RC Kirk (Mar 10)

I've seen advice that recommends reducing dose six weeks before your next PCR test as that provides timely feedback of the effect of the reduction.

by jaideepdoc (Mar 10)

hi
I have been diagnosed with CML in Dec 2017 and have been on complete molecular remission since March 2018. My doctors insist on continuing on 100 mg spycel daily. i have been reading

by scuba (Mar 10)

No need to compromise.
He has had an OUTSTANDING response. Your intuition of dropping to 20 mg is smart.
The lower the dose, that works, the better when it comes to sprycel. His CML is getting
Category: Treating CML

Replies: 5

Last updated: 11 March 2019
jriccoboni on 10 March 2019

Category: Children & young people

Replies: 5

Last updated: 11 March 2019

6 month pcr
by Tbrand (Mar 11)

I stayed at .2 to .7 at 6 thru 11 month and .02 at 12 month. Same or less since. Diagnosed 1/1/2016.

by RC Kirk (Mar 10)

Yes. https://www.cmlsupport.org.uk/article/bcr-abl1-levels-increase-periphera...
"The BCR-ABL1 transcript level increased significantly following exercise"
Here is a link to the full

by jriccoboni (Mar 10)

Can working out before a blood draw raise your PCR? I am very active and ran a 5 k the morning of my draw.

by jriccoboni (Mar 10)

thank you for the quick response that makes me feel better. Hope the TFR continues to go well.
Category: Children & young people

Replies: 5

Last updated: 11 March 2019
Mike B on 13 February 2018

Category: Treating CML

Replies: 10

Last updated: 10 March 2019

Switch TKI thoughts?
by Nimbus2 (Mar 10)

Unusually, for Internet forums, this forum has an excellent search engine (whether I use the inbuilt search engine or raw Google). These historic postings can be very helpful.
I seem to be following

by Mike B (Feb 15)

Thank you all for the input. After a very long discussion we have gone to a trial of 800 mg dosage. We will check for toxicity in a few weeks and a PCR check in 6 weeks and again in 3 months. She

by AlastairC (Feb 15)

Mike, My reduction on 400mg was similar after diagnosis (11 years ago!), and extended by a period on 200mg as my chronic low wbc worried my Consultant. Then boom at 18 months I went from about .7%

by nigel (Feb 15)

Hi Mike, my results were similar to your, perhaps a little slower, I also have no side effects off Imatinib, and did consider changing TKI, but did not. It took me over 18 months to get to MMR, back
Category: Treating CML

Replies: 10

Last updated: 10 March 2019
Bill Miller on 20 February 2019

Category: Treating CML

Replies: 23

Last updated: 11 April 2019

At an early crossroads, would love your thoughts
by Bill Miller (Mar 10)

Thanks Gitel and Alastair. I am grateful for the kindness. I’ll try to share more information as I go through a tough stretch over these coming months.

by AlastairC (Mar 9)

Bill, I'me very sorry to hear this, and I'm afraid your blast % is well outside my experience, and I think the experience of most of us. The further tests which you describe sound

by Gitel (Mar 9)

I was diagnosed at, and use Mayo in Rochester. The great advantage is that the physicians work in teams and consult, so you never have to worry if one person is missing something. Their hospitals

by Bill Miller (Mar 9)

Shortly after finding about the blasts I was given a unit each of platelets and blood. My numbers were so critically low (9 and 7.4 respectively). While doing that my Mayo Clinic hematologist called
Category: Treating CML

Replies: 23

Last updated: 11 April 2019
donnanally on 27 February 2019

Category: Uncategorised

Replies: 4

Last updated: 9 March 2019

10 mg Sprycel?
by donnanally (Mar 9)

Thanks! I take 400mg of magnesium every night and have for years. I take Vital Plan's Prevention Plus which has lots of vitamins and 200mcg of B12 and another 100mg of magnesium.

by scuba (Mar 8)

Consider adding some magnesium to your diet (I take supplements) for general muscle aches and pains and for good sleep. I also take a B+ vitamin along with extra B12 now and then when I am feeling

by donnanally (Mar 8)

Hi! Thanks for responding! I asked if he could lower it from 50mg to 20mg since my numbers were so good and had been good from the beginning. My numbers continued to stay low so he

by scuba (Feb 27)

You should stay on 20 mg until your PCR falls below 0.01% (M.D. Anderson scale) at a minimum. And remain on it for two more years before trying to stop altogether. Interesting they lowered your dose
Category: Uncategorised

Replies: 4

Last updated: 9 March 2019
cmljax on 3 March 2019

Category: Uncategorised

Replies: 5

Last updated: 9 March 2019

Heart Arrhythmia
by cmljax (Mar 9)

Thnaks for the additional thought Bill. My HGB has been between 15 - 16 for over 2 years now. It did drop to 13 once during early treatment in late 2016, but onyl stayed there briefly.

by Bill Miller (Mar 8)

Another thing to consider is anemia. Over the past few weeks I’ve dropped from 11.7 into the 10s, then 9s, then 8s, and now 7s for HGB. When I was in the 10s and 11s I was usually not having

by cmljax (Mar 6)

Thanks Bill and RC: Update after being on Metroprolol for a week now, the quantity of PAC's/PVC's had diminished. but I don't know if it's the new medicine or just the "normal

by Bill Miller (Mar 5)

I've had arrhythmia issues before, during, and after Sprycel. I was on beta blockers 3 years before my CML diagnosis, although I now wonder what was going on in my blood back then. After about 4
Category: Uncategorised

Replies: 5

Last updated: 9 March 2019
scuba on 6 March 2019

Category: Uncategorised

Replies: 16

Last updated: 9 March 2019

Fasting 2019
by scuba (Mar 9)

The only liver cleanse I know of is what you eat or don't eat that is natural. I don't know anything about liver cleanse kits. Real food or zero food is my approach. Listen to your body when

by donnanally (Mar 8)

Hi Scuba! I tried a 3 day water fast about a month ago. On day 3, I didn't have the energy to raise my hands over my head to wash my hair and was extremely out of breath. I

by scuba (Mar 8)

Wanted to pass this along ...
https://news.harvard.edu/gazette/story/2019/02/exercise-fasting-shown-to...
Exercise, fasting help cells shed defective proteins

by scuba (Mar 8)

Won't continue past day 3 - no need. Start off with an orange (get some potassium) to 'break' the fast and some almonds. Wait several hours until later in the day and resume eating
Category: Uncategorised

Replies: 16

Last updated: 9 March 2019