TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

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

You are here

Forum

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: 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
Sandra Djureholt on 7 January 2019

Category: Side effects

Replies: 9

Last updated: 17 February 2019

Splenomegaly
by RC Kirk (Feb 17)

And raising babies at the same time!

by Sandra Djureholt (Feb 17)

That's ok :) It's quite a lot of work running a site!

by David Fitz (Feb 16)

Hi Kirk,
Yes that's broken at the moment. We are working to fix / replace.
David

by RC Kirk (Feb 16)

I don't get notifications either. Maybe that feature isn't working?
Good to hear that your spleen isn't bothering you any longer.
Category: Side effects

Replies: 9

Last updated: 17 February 2019
Tanya Cuffe on 6 February 2019

Category: Uncategorised

Replies: 28

Last updated: 16 February 2019

Am so nervous,changing to Sprycel from Gleevec...
by Tanya Cuffe (Feb 16)

Magnesium citrate is good form to take.Had enough of feeling unwell quite frankly...hot cold anxious depressed hair loss aches all over early menopause etc.The good things are that there is hope for

by Felix (Feb 16)

Hi, saw my doc,had lots of blood tests including HIV and all the Hepatitis ones goodness knows why and an ECG to see how I am doing before starting on new meds .She wants to start me on 100 mg and I

by Tanya Cuffe (Feb 16)

Hey Denise,started on Sprycel 50 mg.Have taken 4.Dont see doctor til end March so hopefully results will be good!Have been feeling bit weird in them,itchy scalp emotional and bit depressed but

by Felix (Feb 16)

Hiya Tanya ,Just checking up on you to see how you are feeling on your new meds ,hope you are feeling ok.Havent started on mine yet ,Denise.
Category: Uncategorised

Replies: 28

Last updated: 16 February 2019
fiona vaughan on 3 January 2019

Category: Uncategorised

Replies: 4

Last updated: 16 February 2019

CML meeting at Hammersmith Hospital 16 February
by fiona vaughan (Feb 16)

The next date at Hammersmith for a meet up of patients and caregivers with CML is 18 May and 7 sept. Today I finally got to meet other people with CML ....what a relief to know I’m not

by David Fitz (Feb 9)

We don't have a date yet for the 2019 patient day. It's usually every year, and details will be posted on this site as soon as they are available. As you can imagine, it takes quite a lot of

by fiona vaughan (Feb 9)

I’m not sure when the meetings are but I know Hammersmith have them 3 x per year. I have come over from The Middle East especially to go to the one next weekend. I also came over to get a

by M.ashcroft (Jan 14)

Hi Fiona

Do you know if there will be another meet up later in 2019 as I would be traveling from Warrington and I can't make it for the 16.2.19 meeting although I would like to attend one of
Category: Uncategorised

Replies: 4

Last updated: 16 February 2019
bendicco on 16 February 2019

Category: Drug-food interactions

Replies: 3

Last updated: 16 February 2019

MUSHROOMS AND CML
by bendicco (Feb 16)

See what I mean? And yes according to them ginger was a really big no-no!

by AlastairC (Feb 16)

New one on me. I was on Glivec and then generic imatinib for over 11 years. Must have consumed kilos of garlic (&ginger if they include that) and 10s of kilos of mushrooms over that period.

by Tbrand (Feb 16)

That’s not good, it would include girls. I’m on Imatinib and associate with all the G’s and have never had issues.

by bendicco (Feb 16)

Conflicting information , I was told by the oncology pharmacist at Sloan to stay away from mushrooms! I was DX with CML almost 3 years ago and take Gleevec. I was also told to stay away from
Category: Drug-food interactions

Replies: 3

Last updated: 16 February 2019
gillianb on 15 February 2019

Category: Uncategorised

Replies: 2

Last updated: 16 February 2019

Young Adults with CML
by gillianb (Feb 16)

Thank you David! Yeah I'm just going to forge ahead and try to take extra good care of my body and mind. I sure appreciate the online community we have here, it has been helpful.

by David Fitz (Feb 15)

Hi Gillian,
Two months is no time at all. When you start taking the medication for CML, it starts to break down all sorts of things in your body - some doctors give medication like allopurinol to

by gillianb (Feb 15)

Hello,
I am 22 years old and was diagnosed 2 months ago. I started on Dasatanib 100mg daily. They will test my BCR-ABL again in April, as well as another bone marrow biopsy to see how things are
Category: Uncategorised

Replies: 2

Last updated: 16 February 2019
Tanya Cuffe on 13 February 2019

Category: Uncategorised

Replies: 10

Last updated: 16 February 2019

Antidepressants with CML meds?
by Tanya Cuffe (Feb 16)

New area,new doctor need be found...taking biotin for hair loss as believe it’s ok...Thank you,friend,for saying things will get better!Theres always hope😊

by kat73 (Feb 15)

Your primary care doctor can order the tests, and I don't see any reason why not to - you want to be in the best nutritionally healthy condition you can be in order to help the Sprycel help you

by Tanya Cuffe (Feb 15)

dont know where you get vitamin levels tested? Maca was for menopausal symptoms,panadeine forte was an excuse to take something...will stop now plus the rest.feel clarity regarding what I should do

by kat73 (Feb 15)

I second everything Dawn so helpfully added. Have you had your vitamin D, B, and Magnesium levels tested and found you were deficient? If not, they are a waste of money and stomach acid
Category: Uncategorised

Replies: 10

Last updated: 16 February 2019
bendicco on 15 February 2019

Category: Uncategorised

Replies: 0

Last updated: 15 February 2019

Fatigue on Gleevec
by bendicco (Feb 15)

Anyone take beet powder to help with fatigue?
Category: Uncategorised

Replies: 0

Last updated: 15 February 2019
MJP on 9 February 2019

Category: Blood tests

Replies: 6

Last updated: 15 February 2019

0.029% at 9 months
by LabNoir (Feb 15)

Thanks, I did read a bunch of paper about increasing PCR and Some paper suggest a variance of 0.5 log, others 2 fold increase. But I guess none of these apply at around MR4 as it reach the detection

by RC Kirk (Feb 12)

Good morning Mark,
As you haven't had any side effects, I can understand why your doc doesn't want you at a lower dose. The research I've read indicates that drug breaks due to

by AlastairC (Feb 12)

The difference between 0.026% and 0.017% is well within the accuracy limits of the test process - to all intents and purposes they are the same. You are clearly a hare (getting to MMR in 6 months),

by LabNoir (Feb 12)

I also just got my 9 month PCR and it is similar to yours at 0.026% but I ain’t happy about it at all since my 6 month number is 0.017%! It is funny how these simple sequences of numbers can
Category: Blood tests

Replies: 6

Last updated: 15 February 2019