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charron on 13 June 2019

Category: Treating CML

Replies: 3

Last updated: 15 June 2019

New parent with a daughter diagnosed with CML
by David Fitz (Jun 15)

Hi Charron,
It’s really important to remember that patients who are doing really well, and suffer no / little side effects (and there are a lot of them!) don’t tend to post to online

by charron (Jun 14)

Thank you will keep you posted

by VickyK. (Jun 13)

Dear Charron,

I hope all the best for your daughter!I know this feeling but trust me everything will get better!I am 31 years old diagnosed 9 months ago with CML. I started with nilotinib

by charron (Jun 13)

Hi All,
My daughter 24 was diagnosed with CML last 2 weeks ago not sick just went for a blood test for women problems. She is in Australia and is an Australian. We are still waiting on
Category: Treating CML

Replies: 3

Last updated: 15 June 2019
Rick B on 14 June 2019

Category: Uncategorised

Replies: 2

Last updated: 14 June 2019

Question about TFR
by Rick B (Jun 14)

Very helpful and hopeful! Thank you!

by AlastairC (Jun 14)

Rick, I am 7 months in to trying TFR. I was in MMR on 400mg imatinib for 10.5 years, then a year on 200mg, and stopped in early November last year. Still MMR so far. The view of the UK CML

by Rick B (Jun 14)

Dx on June 14, 2018 with 12.66% bcr-abl. Started treatment on July 5, 2018 f 400 mg Imatinib daily. Last blood draw was June 3rd. Here is report from my hematologist, Winship
Category: Uncategorised

Replies: 2

Last updated: 14 June 2019
Trevorp93 on 3 June 2019

Category: Children & young people

Replies: 6

Last updated: 12 June 2019

Need advice on pcr results
by Stuart Johnston (Jun 12)

regarding PCR results
the Best bit of guidance I was given by my Hematologist is that the PCR blood test is like playing darts you either get bulls eye or you miss the board altogether. Plus

by scuba (Jun 4)

David - in fact patients achieving CCyR, complete cytogenetic remission (PCR ~ 1.0 %) can expect a normal lifespan.
MMR is truly a very deep response at the molecular level.
I agree with you,

by David Fitz (Jun 4)

I've never been undetectable. It's not necessarily a realistic goal. As PCR technology improves, lower and lower amounts of residual disease may be found and those who were "

by scuba (Jun 4)

Trevor,
As crazy as it sounds - you are likely to have a faster result downward by LOWERING your dose from 100 mg currently to 70 mg or even 50 mg. I'll explain.
Dasatinib (sprycel) is a
Category: Children & young people

Replies: 6

Last updated: 12 June 2019
Mick E on 10 June 2019

Category: Uncategorised

Replies: 2

Last updated: 12 June 2019

Yeast infection in gut
by Mick E (Jun 12)

I was asking the question as I’m interested to how the drugs affect the digestive system and if they are harmful to the bacteria that keeps yeast infection proliferating.
I personally

by EvaH (Jun 11)

Two things you could try is a course of B12 (injections maybe?)
Or if you really think yeast is the issue, its likely that it predates the TKIs. Most folk on "western" diets have too much

by Mick E (Jun 10)

Have any of you had a yeast infection in your gut as a consequence of taking TKI’s?
Im trying to understand what can be causing constant fatigue and lethargy even though my bloods don’t
Category: Uncategorised

Replies: 2

Last updated: 12 June 2019
Poppert on 21 April 2019

Category: Side effects

Replies: 3

Last updated: 11 June 2019

Imatinib effect on vision?
by EvaH (Jun 11)

hi again
Very similar story and stats to me , i did not get eye problems till 6 months after diagnosis.
It likely isnt the same as what i had but if you are experiencing floaters or a

by Poppert (Apr 22)

15 months on Imatinib (whereof last 3 on 600 mg). WBC 323 at diagnosis on the scale where 3.5-8.8 is normal. I’m 45 and I already have had bifocals for 2-3 years.
Eyesight was ok at diagnosis

by EvaH (Apr 22)

How long have you been on imatanib?
How high was your white cell count at diagnosis?
What age are you?

Generally short sightedness will not get worse as you age, but you can need bifocals.

by Poppert (Apr 21)

For some time now I have been feeling my vision has become worse. Especially after I moved up to 600 mg Imatinib. I went to my optician last week and she was quite surprised of the change. I have
Category: Side effects

Replies: 3

Last updated: 11 June 2019
Rick B on 26 April 2019

Category: Uncategorised

Replies: 4

Last updated: 11 June 2019

Imatinib and alcohol
by EvaH (Jun 11)

I cant drink as much as I used to ...i find it gives me disproportionate hangovers
Im very happy to have CML as an excuse to drink in moderation :)

by Philiptibbs (May 25)

I'm taking Imatinib and I drink Lime alcohol seltzer drinks and they seem to be better for me. If I drink a margarita or alcohol drink as my first drink I get a little tired but after 3-4 I

by LisaLisa (May 20)

I have noticed the same thing. Alcohol just makes me feel...weird sometimes. I hardly drink at all now. But Guinness is usually ok. No idea why. But I can actually have 2 of them and stay awake!

by David Fitz (Apr 26)

I can't think of any particular reason why that might be. Low blood counts wouldn't really impact your blood alcohol concentration - that is blood volume, rather than content.
David.
Category: Uncategorised

Replies: 4

Last updated: 11 June 2019
Mick E on 10 June 2019

Category: Uncategorised

Replies: 2

Last updated: 11 June 2019

Ashwagandha
by Mick E (Jun 11)

Many thanks for the reply. It’s my liver which a big problem at the moment so will look at taking as a tea as it may help other issues. The other herbs you mentioned I will to

by israel (Jun 11)

Hi, I used to take one ashwagandha capsule per day but was recommend to stop because in my case it could cause harm to the liver. The doctor (Not my CML doctor) who advised me to stop taking

by Mick E (Jun 10)

After searching on the web for natural products to help with stress and anxiety the product Ashwagandha popped up. Sounds like it may have other benefits to help with the side effects of TKI
Category: Uncategorised

Replies: 2

Last updated: 11 June 2019
Lilahmae98 on 27 May 2019

Category: Reproductive health

Replies: 5

Last updated: 10 June 2019

Conception/fertility/miscarriages
by jeffcarroll34 (Jun 10)

Our second daughter was a dasatinib baby and she's totally fine. We joke that the dasatinib made her a little more mellow than our oldest daughter.
If you have any questions,

by Lilahmae98 (May 27)

Thank you, I will look at that old thread.

by Lilahmae98 (May 27)

Thank you so much for sharing your experience and information, I appreciate it. Congrats on twins such a blessing.

by David Fitz (May 27)

Imatinib (Glivec / Gleevec) has the most research around fertility because it's been around the longest. Sort of obvious, but important too.
It turns out that with imatinib, being pregnant as a
Category: Reproductive health

Replies: 5

Last updated: 10 June 2019
scuba on 10 June 2019

Category: About CML

Replies: 0

Last updated: 10 June 2019

"Diamonds are forever ... ", report from ASCO
by scuba (Jun 10)

https://www.medscape.com/viewarticle/914055?fbclid=IwAR22pDSgcEl7CoUSkM5...
Diamonds Are Forever, but TKIs in CML Don't Have to Be
Alexander M. Castellino, PhD
June 06, 2019
"Treatment-free
Category: About CML

Replies: 0

Last updated: 10 June 2019
Stacey Doubblestein on 10 August 2018

Category: About CML

Replies: 6

Last updated: 7 June 2019

Any Vetrans with CML?
by MountainGuyz (Jun 7)

Hello
Although this reply is a year since you posted the question, please advised of many cases, several of which are in the USA Veterans Administration and USA Federal Registrar indicating a

by Stacey Doubblestein (Aug 14)

-CML can be caused by radiation several men in my husband's Army unit have been diagnosed with some type of blood cancer in the past year

by chevyflame (Aug 11)

ATSDR is concerned about the health effects of exposures to chemicals found in the drinking water at Camp Lejeune. Before 1986, drinking water from the Tarawa Terrace and Hadnot Point treatment

by chevyflame (Aug 11)

Please review this article from USMC Camp Lejeune. I will post another article which lists chemicals involved.

March 17, 2017
JACKSONVILLE, N.C. (WITN) - Tuesday is the day Camp Lejeune
Category: About CML

Replies: 6

Last updated: 7 June 2019
Tanya Cuffe on 5 June 2019

Category: Uncategorised

Replies: 2

Last updated: 6 June 2019

Sprycel 6 days in...
by Tanya Cuffe (Jun 6)

Thank you for that,David,am being overly paranoid as per usual :) I worry bout everything ,currently taking Hormone Replacement and Antidepressants to try deal with life but they also get me worried

by David Fitz (Jun 6)

I don't think it's true to say you can't get a pleural effusion on 50mg, but it is much less likely than on higher doses.
Here are some symptoms of PE. Basically, the fluid around

by Tanya Cuffe (Jun 5)

Hey guys!Have been taking Sprycel nightly,50mg,with little or no sleep for past 6 days. Taking magnesium,tumeric,Vit.D plus starting HRT for menopause induced by Gleevec.My question is this,have
Category: Uncategorised

Replies: 2

Last updated: 6 June 2019
scuba on 5 June 2019

Category: Uncategorised

Replies: 2

Last updated: 5 June 2019

Vitamin D & Leukemia
by scuba (Jun 5)

Make sure to take vitamin K2 along with D(3) as K2 uses D in calcium mobilization. Hard to overdose on D when K2 is available.
I hit 100 also late last year by September without knowing it (wasn

by onekayaker (Jun 5)

Hey Suba,
I recently went for a blood workup and everything looked good but my Vit D was just over 100. I adjusted it down 2,000 UI. My D level was at 57 taking 6,000UI so I went to 10,

by scuba (Jun 5)

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0144308
https://www.sciencedaily.com/releases/2016/01/160106125203.htm
Low Cloud Cover-Adjusted Ultraviolet B Irradiance Is
Category: Uncategorised

Replies: 2

Last updated: 5 June 2019
stefanolucas on 3 June 2019

Category: Treating CML

Replies: 4

Last updated: 5 June 2019

TP 53 mutation
by scuba (Jun 5)

Regarding Prima-1
https://academic.oup.com/biohorizons/article/doi/10.1093/biohorizons/hzv...

by Sarah63 (Jun 5)

I don’t know if this link will work, but here is information on P-53 that I have been studying over the past 6 months.

https://genomediscovery.org/2018/11/cancer-therapy-targeting

by stefanolucas (Jun 5)

Thank you scuba for your response !
i read about this TP53 mutation and i saw there exist a molecule named PRIMA-1 that can solve our problem ! Does anyone know something about this molecule ?

by scuba (Jun 3)

TP53 mutation is associated with both chronic phase and blast phase of CML. It could very well explain her early difficulty. The good news is that her CML reverted to chronic phase and is
Category: Treating CML

Replies: 4

Last updated: 5 June 2019
saifur360 on 3 June 2019

Category: Treating CML

Replies: 2

Last updated: 5 June 2019

Is it possible to turn from cml to aml?
by saifur360 (Jun 5)

Thank you

by David Fitz (Jun 3)

CML can progress to "blast crisis", which is similar to AML in many ways. But this is not that common really and usually occurs when someone has been diagnosed very late when the disease

by saifur360 (Jun 3)

My diagnosis is Chronic Myeloid Leukemia in Chronic Phase.
At first my blast was 5% but now it is 00%
My pcr is 0.033
Is it possible to turn AML or other leukemia?
Category: Treating CML

Replies: 2

Last updated: 5 June 2019
jriccoboni on 4 June 2019

Category: Uncategorised

Replies: 2

Last updated: 5 June 2019

Updated PCR Results
by jriccoboni (Jun 5)

Thanks Dave

by David Fitz (Jun 4)

Congratulations. On ELN guidelines that is an optimal response! Can't ask for much more than that.
David.

by jriccoboni (Jun 4)

Rabbit turned to Turtle?
Got my 9 months results back.
Diagnosed 8/17/2018
PRC at diagnosis: 58%
100 mg sprycel
1 month: 17 %
3 months: 0.19 %
6 months: .16 % ( took the test after working out
Category: Uncategorised

Replies: 2

Last updated: 5 June 2019
Nimbus2 on 3 June 2019

Category: Uncategorised

Replies: 0

Last updated: 3 June 2019

Flumatinib Shows Promise in Chronic-Phase Chronic Myeloid Leukemia
by Nimbus2 (Jun 3)

Another TKI under clinical evaluation.
Flumatinib — a derivative of imatinib — may have superior efficacy compared with imatinib as frontline treatment in patients with 26chronic myeloid
Category: Uncategorised

Replies: 0

Last updated: 3 June 2019
kali on 31 May 2019

Category: Uncategorised

Replies: 3

Last updated: 3 June 2019

Magnesium
by scuba (Jun 3)

RBC = red blood cell test.... it is not a magnesium test.
Magnesium test will say magnesium or Mg.

by kali (Jun 3)

Thanks Scuba! I started Calm which is the citrate version.
I read that the blood test which detects low magnesium is the RBC.
Not sure if I should ask for that test. I do know my aching

by scuba (May 31)

"Can magnesium be low even though serum magnesium is in the normal range?"
Yes. Magnesium (along with calcium) is a critical electrolyte our plasma (circulatory system/ tissues)

by kali (May 31)

Hello to all!
Can magnesium be low even though serum magnesium is in the normal range?
Does Sprycel affect magnesium and potassium levels?
Category: Uncategorised

Replies: 3

Last updated: 3 June 2019
johnw1001 on 3 June 2019

Category: Food & fitness

Replies: 1

Last updated: 3 June 2019

Lifestyle after cancer
by David Fitz (Jun 3)

Hi John,
Though I posted the conference report, it was actually Nigel Deekes who went this year. With my twins now home and keeping us pretty busy I wasn't able to go this year. Usually both

by johnw1001 (Jun 3)

hi All,
In his report on the recent CML Advocates conference David highlighted the second edition of the book by Professor Robert Thomas titled "Lifestyle after Cancer" .This is a topic
Category: Food & fitness

Replies: 1

Last updated: 3 June 2019
Tanya Cuffe on 27 May 2019

Category: Uncategorised

Replies: 14

Last updated: 2 June 2019

Sydney recommendations?
by Tanya Cuffe (Jun 2)

Thank you friend,yes it is an amazing place and once again,am grateful for your support and advice!Gotta make the most of everything I guess,and be thankful😊❤️🙏🏻

by Felix (Jun 2)

Hiya,when I was going thru the menopause all I had was the occasional hot flush used to carry a small battery fan haha .The night sweats were a bit of a bugger so cotton nighty and cotton sheets

by Tanya Cuffe (Jun 2)

Thank you Denise,you are very sweet and kind to get back to me so quickly.Did you not have any menopausal things going on?I do take magnesium but will lessen coffee and not going take HRT.Going

by Felix (Jun 2)

Hiya Tanya ,you really are having a hard time .Sprycel has had no effect on me regarding sleep ,are you taking magnesium about an hour before bed as that can help with sleep.Do you have caffeine if
Category: Uncategorised

Replies: 14

Last updated: 2 June 2019
Nimbus2 on 31 May 2019

Category: Uncategorised

Replies: 1

Last updated: 1 June 2019

'Dying to Survive'('Wo bu shi yao shen'): Film Review
by Nimbus2 (Jun 1)

A news review here. An interesting discussion.
https://www.youtube.com/watch?v=-uXbkiaEvuA

by Nimbus2 (May 31)

I found this while searching for something else. A film about imatinib. Extract below.
https://www.hollywoodreporter.com/review/dying-survive-1214786
Produced by hit-maker Ning Hao and directed by
Category: Uncategorised

Replies: 1

Last updated: 1 June 2019