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The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

£3M Award for Pioneering Scottish Trial for Leukaemia (CML)

BCR-ABL1 levels increase in peripheral blood but not in granulocytes after physical exercise

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Justina on 23 February 2019

Category: Side effects

Replies: 0

Last updated: 23 February 2019

Side Effects
by Justina (Feb 23)

Good afternoon,

I just want to find out, has anyone experienced hypo pigmentation whilst taking Gleevac?
I take 400mg but I can see that I am becoming lighter.

Even my friends have
Category: Side effects

Replies: 0

Last updated: 23 February 2019
VickyK. on 22 February 2019

Category: Side effects

Replies: 1

Last updated: 23 February 2019

Tasigna hair loss
by Ontasigna (Feb 23)

Hi Vicky,
Its been 2 months i am on tasigna 800 mg.
I do have a bit of hair loss but not significantly though.

by VickyK. (Feb 22)

Hello!Its the first time I am writing to the forum.I am Vicky, 31 years and been diagnosed with cml on October 2018.I started Tasigna 600mg on a daily basis and achieved MMR on my 1st test.I know
Category: Side effects

Replies: 1

Last updated: 23 February 2019
Alaina on 13 October 2018

Category: Uncategorised

Replies: 19

Last updated: 22 February 2019

Tasigna and Supplements
by Alaina (Feb 22)

Hi Cmljax,
Can you share with me the brand of Curcumin supplement you take? And is Curcumin the same thing as Tumeric spice used in Mediterranean food?

by Alaina (Oct 19)

Scuba,

You need to be a registered consulant or paid educator. My mind is blown with the amount of knowledge you (and others) have and give on these threads. THANK YOU! I'll admit I am

by Alaina (Oct 19)

Denise, Thank you for the advice! I did not know this!

by scuba (Oct 19)

Hi Alaina,
Your vitamin D level is dangerously low. Vitamin D is often thought of as the bone vitamin and that is true - but what vitamin D really does is activate our bone marrow - bone cells and
Category: Uncategorised

Replies: 19

Last updated: 22 February 2019
Bill Miller on 20 February 2019

Category: Treating CML

Replies: 7

Last updated: 22 February 2019

At an early crossroads, would love your thoughts
by scuba (Feb 22)

Diane - I took 8 grams when I was at my worst with CML. Anyone with a lot of blasts should take 8 grams of Curcumin ( in my opinion). I don't take 8 grams a day anymore (it's expensive

by scuba (Feb 22)

Sometimes when you go looking - you find. That is how I learned about clonal populations of cells that together define blood abnormalities - the worst of which lead to CML, AML and related. We

by Diane CW (Feb 21)

Scuba
You mention you take 8 grams a day of Curcumin, I have looked for some online but can seem to find any that come in similar doses/tablets. I can find some that are 500mg?? Quite confused about

by Bill Miller (Feb 21)

Scuba, wow, I must've been typing while you submitted this. It's really crazy the similarities. I too was told that my new translocation normally indicates AML (the fish test for AML showed
Category: Treating CML

Replies: 7

Last updated: 22 February 2019
alison on 6 August 2018

Category: Treating CML

Replies: 14

Last updated: 21 February 2019

May switch to Bosulif -- Advice please
by onekayaker (Feb 21)

Hi Alison,
I was switched to Bosulif from Sprycel after rejecting the latter. My doctor and Dr. Kantarjian (MD ANderson location) decided to put me on 100mg Bosulif and eased me into the the

by alison (Feb 21)

TTT in case anyone has any recent advice/experience about Bosulif. If PCR again above .1 my husband will go on 100 mg Bosulif and titrate up from there. Hoping 200 or 300 will do the

by alison (Jan 26)

@James thx for another detailed reply. My husband has been fortunate that he remained undetectable at low doses of both Tasigna and Sprycel. That’s why we are hoping he can start on

by Liamsdad (Jan 26)

Hi, Alison. I was given your email so I hope you got my message. If not let me know here and I'll check back here. I've been away for a few weeks and haven't been
Category: Treating CML

Replies: 14

Last updated: 21 February 2019
Riggered on 17 February 2019

Category: Drug-drug interactions

Replies: 4

Last updated: 21 February 2019

Dasatinib and strained back muscle
by bendicco (Feb 21)

I cannot take NSAIDS because l had gastric bypass surgery in 2012. Tylenol and TKIS don’t really go well together. Recently had a bad muscle pull and my oncologist prescribed Tramadol. Works

by Gitel (Feb 17)

I was told no NSAID drugs at all. Ouch. I have osteoarthritis and was using various NSAID drugs for pain. Aleve is an NSAID. What am I missing here? Someone? Thanks. I

by Riggered (Feb 17)

Thanks MJP. I'll check it out with my Onc.

by MJP (Feb 17)

I suffer from chronic back pain. If it’s bad enough steroids such as a medrol dose pack of prednisone work for me. I also don’t hesitate to take Aleve. I’ve
Category: Drug-drug interactions

Replies: 4

Last updated: 21 February 2019
Skeltonn on 20 February 2019

Category: Treating CML

Replies: 3

Last updated: 21 February 2019

Sprycel and weight gain
by Bill Miller (Feb 21)

Yes and yes. I had terrible fatigue on 140mg. I also waxed and waned between diarrhea and constipation, which amplified the fatigue. And I was only on at that dose for 3.5 weeks. I did also gain

by Skeltonn (Feb 21)

Thank you for the reply. I have gained about 30 pounds in the last 12 months. I am 12 months from first being diagnosed and still trying to navigate this disease.

by Dustylloyd (Feb 20)

Hi Skeltonn I put 2 stone in the first 12 months and to be honest 4 years later haven’t really chipped much of that off! but it hasn’t gone up any more, just seemed to have levelled off

by Skeltonn (Feb 20)

Has anyone experienced weight gain while taking Sprycel?
Also, the fatigue is brutal. Any ideas on help?
Thanks!!
Category: Treating CML

Replies: 3

Last updated: 21 February 2019
Ros77q on 18 February 2019

Category: Treating CML

Replies: 10

Last updated: 21 February 2019

Stopping dasatinib
by scuba (Feb 21)

Best time is morning to mid day. Avoid taking in the evening as it may interfere with sleep (which makes sense since we evolved to make vitamin D (skin) when the sun is shining).
I wish you all the

by Ros77q (Feb 21)

Thanks scuba
what Would be the best time to take vitamin d3 supplements and with what food. I usually take dasatinib around 6 pm.

by Ros77q (Feb 21)

Hi scuba
when i did my blood test it showed 24% blast Doctor is planning me to ponatinib. Currently im on dasatinib 100 mg. I am so confused right now. I am having my bmt soon.

by scuba (Feb 20)

What is your blast cell percentage currently? As long as your blast cell count is less than 5% you have some time to work through this. Bone marrow transplant is a last resort before trying other
Category: Treating CML

Replies: 10

Last updated: 21 February 2019
Harsh on 8 January 2017

Category: Uncategorised

Replies: 6

Last updated: 21 February 2019

Blast phase cml
by David Fitz (Feb 21)

Hi,
Typically, when a BMT is planned and ponatinib is used it’s used to hit the CML as hard as it can in advance of the transplant. This is to reduce the amount of disease in your system so

by Ros77q (Feb 21)

Hi sandy
after reading your post i feel little relief. I have cml and first started with imatinib. Later cml progress to blast phase. After that i was put on dasatinib and achieve second

by Harsh (Mar 5)

Hi sandy,

After your advice I spoke to my oncologist about BMT .He told to wait for for my 3rd month pcr test.If Iam in 2nd chronic phase we may go for BMT and if the blasts are less than 10%

by sandy craine (Jan 21)

Hi,
I am sorry you have been diagnosed in Blast Phase CML.... Most CML specialists treat CML in BP by first trying to get you back to a second chronic phase and at the same time looking to
Category: Uncategorised

Replies: 6

Last updated: 21 February 2019
Tanya Cuffe on 17 February 2019

Category: Uncategorised

Replies: 9

Last updated: 20 February 2019

can I go back?
by Tanya Cuffe (Feb 20)

My doc said I can go back as am feeling so awful so hope to God it’s ok to do so!Thank for trying help me!

by Evelinka89 (Feb 20)

Hello,
I accidentaly found a research article from 2017 stating, that switching back from 2nd generation to imatinib is possible, but after achieving (do not remember which type... I think CMR

by Tanya Cuffe (Feb 19)

Thank you,friend am going off Sprycel is affecting my mental state dreadfully no matter what anyone says...can cope with Glivec sides and am grateful for it as long as it’s still working...

by ThomasS (Feb 19)

Tanya I am on Sprycel now. The Gleevec stopped working after about 8-9 years. The 100mg of Sprycel was really tough with all the side effects and not sleeping. On 70mg now and the side effects
Category: Uncategorised

Replies: 9

Last updated: 20 February 2019
RC Kirk on 20 February 2019

Category: Clinical trials

Replies: 1

Last updated: 20 February 2019

Scuba, this sounds a little phishy to me. What do you think?
by scuba (Feb 20)

It is 'fishy' - and of course diving surrounds you with fish (if you're lucky).
Actually - I know of one couple who went diving every data twice a day in their retirement. They

by RC Kirk (Feb 20)

This was posted on the LLS forum. Seems a little suspect to me. I thought maybe you could try it out the next time you go diving.

Barindelli February 01, 2019 at 7:43am
Nitrogen
Category: Clinical trials

Replies: 1

Last updated: 20 February 2019
scuba on 27 February 2018

Category: Food & fitness

Replies: 20

Last updated: 20 February 2019

Fasting and Cancer part 2
by scuba (Feb 20)

Medication for CML does not have any significant calories (close to or actually zero). You take your medication throughout a fast on an empty stomach - but only if the medication does not require

by Lucky Utubor (Feb 20)

I really don’t understand they fasting story. How can one fast without stoping daily medication intake ?

by scuba (Feb 19)

I drink coffee every day - several cups in the morning. Sometimes an espresso or two after dinner with friends. Fasting is the cessation of calorie intake. Coffee has no calories - so no problem.

by Ray Sell (Feb 19)

Thank you Scuba. Wish I would have asked instead of internet research on breaking fast. Do you recommend no caffeine during fast? Are you easy into ketosis? What process do you use
Category: Food & fitness

Replies: 20

Last updated: 20 February 2019
scuba on 2 February 2019

Category: Uncategorised

Replies: 4

Last updated: 20 February 2019

Fasting and Cancer (additional information)
by scuba (Feb 20)

Thomas,
I use ketone sticks to measure ketone levels. I enter ketosis after a day fasting. I will remain in ketosis after starting food again as long as my carb load is less than 20-30 grams. In any

by thomas.c (Feb 20)

Hi Scuba,
3 days might not be enough. In Dr Seyfried’s book recommend to start with 7 days if you are coming off from a regular “american diet”. Even that is just a broad guess. As

by scuba (Feb 19)

Thomas - Great to read your personal experience with this approach.
Of course you know there is no difference between 0.0019 and 0.0031 PCR .... Anything below 0.01% is indistinguishable from PCRU

by thomas.c (Feb 19)

I actually tried a very strickt keto diet and it doesn’t seem to have effect on my cml.
I was diagnosed 1.5 years ago, i’m in MR4.5 now, and taking 100mg dasatinib. I’m 33 years
Category: Uncategorised

Replies: 4

Last updated: 20 February 2019
Lucky Utubor on 19 February 2019

Category: Blood tests

Replies: 4

Last updated: 20 February 2019

BCR-ABL increase
by RC Kirk (Feb 20)

It will be interesting to see what the result is at your usual lab. Hopefully it's just a fluke and your next test will be back to normal.
Do you usually get a copy of your BCR/ABL1 report

by Lucky Utubor (Feb 20)

Honestly I don’t know but I would ask.

by Lucky Utubor (Feb 20)

Honestly I don’t know but I would ask. My full blood count is normal only the wbc is a little higher 7.3 but still within normal range. Am dead scared .

by RC Kirk (Feb 19)

Yes, your BCR/ABL1 should be retested. Does your lab report the result in the International Scale (IS%)?
Category: Blood tests

Replies: 4

Last updated: 20 February 2019
Jared on 19 February 2019

Category: Uncategorised

Replies: 1

Last updated: 19 February 2019

17 years with CML
by Job Guerra (Feb 19)

Jared,
Hello and congrats on 17 years. I imagine that anyone close to that got on TKI's very soon after they were approved. I'm sure many of us on the site have wondered

by Jared (Feb 19)

Hello their,
My name is Jared.......ive had cml since I was 17 and now im 35......was on interferon then gleevec and now sprycel..........I feel pretty good but as you know you can have your off
Category: Uncategorised

Replies: 1

Last updated: 19 February 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 0

Last updated: 19 February 2019

Symptoms of Pleural effusion
by Ontasigna (Feb 19)

Hi all,
I have tightness on left lower abdomen since 4 days.
Worrying if it can be Pleural effusion. Please help me with symptoms of pleural effusion.
Apart from tightness/fullness i dont have any
Category: Treating CML

Replies: 0

Last updated: 19 February 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 4

Last updated: 19 February 2019

Need advice : urgently
by Ontasigna (Feb 19)

Thanks so much Eva. Appreciate your support and suggestions

by Evelinka89 (Feb 19)

Your Hb is fine then ( I suppose it is quite recent result). If you won't get yellowish or feeling worse, it it is ok to wait until friday. It is quite uncommon during therapy, but could happen

by Ontasigna (Feb 19)

Thanks Eva.
Yes, my indirect bilirubin is 4.8 mg/dl. Urine and eyes are normal in color.
I infact all of a sudden have lost appetite since 4 days n feel full after eating a little. Hemolysis?

by Evelinka89 (Feb 19)

The best and most accurate way is to do an abdominal ultrasound. Physical examination is quite useless as it can detect just enlarged spleen and only if it is at least twice as normal size.
I
Category: Treating CML

Replies: 4

Last updated: 19 February 2019
Ontasigna on 17 February 2019

Category: Treating CML

Replies: 4

Last updated: 19 February 2019

CBC report - Increased indirect bilirubin,Basophils and Eosnophils
by Evelinka89 (Feb 19)

I do not know which bilirubin units are used in your country. I suppose something else than micromoles per liter, because in these units 4,8 is pretty low 😊. I checked various units and if it is mg/

by Ontasigna (Feb 18)

Looking for some suggestions urgently. Pls help.
My indirect bilirubin jas spiked up to 4.8. Is it harmful?

by Ontasigna (Feb 17)

Yes, Neutrophils - 45% and lymphcytes - 43%.
My indirect bilirubin has climed up till 4.8 now.

by AlastairC (Feb 17)

Do your test results show a number for neutrophils?
Category: Treating CML

Replies: 4

Last updated: 19 February 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 0

Last updated: 19 February 2019

Need advice : urgently
by Ontasigna (Feb 19)

Hi all,
Need your advice/suggestions.
I have pain in my left upper abdomen since last 4 days. My wbc count is normal- 5300.
I had enlarged spleen 22 cm at dx - 45 days back and i am currently on
Category: Treating CML

Replies: 0

Last updated: 19 February 2019
Zed Mlikojed on 28 January 2019

Category: Getting help

Replies: 10

Last updated: 18 February 2019

Moving abroad with CML diagnosis
by onekayaker (Feb 18)

The two TKIs I took, both makers of the drugs have a out of pocket assistance program. Both were $25,000 per year. Through MD Anderson my out of pocket would have been eaten up quickly

by Zed Mlikojed (Feb 8)

Hi Louise,
thank you very much for your message - this is very helpful information esp. about "in network". I will make sure that the specialist I need operates in the network of the

by LouiseS (Feb 2)

Hi Zed , my husband and I also are from Europe living in the US, in California.
My husband was diagnosed a year ago last Sept. He has a PPO plan through his employer which involves him paying a

by RC Kirk (Jan 29)

If this helps, here is the amount my pharmacy is currently charging for a 30 day supply of 300mg generic imatinib - $5,654.48
Category: Getting help

Replies: 10

Last updated: 18 February 2019