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ramesh kadaru on 27 September 2018

Category: Treating CML

Replies: 1

Last updated: 27 September 2018

BCR-ABL1IS-QUANTITATIVE TEST RESULT
by sandy craine (Sep 27)

Hi Ramesh,
I have some questions:
Given your father has had CML for 25years, can I ask how he has been treated before he was given imatinib (6 months back)?
I assume the PCR test result you quote as

by ramesh kadaru (Sep 27)

Hi My Dad was diagnosed CML 25 years back, he is now 73 years old. He was using Imatinib 6 months back and during the BCR-ABL1IS-QUANTITATIVE TEST RESULT BCR-ABL1 IS -NCN
Category: Treating CML

Replies: 1

Last updated: 27 September 2018
jriccoboni on 26 September 2018

Category: Treating CML

Replies: 7

Last updated: 27 September 2018

PCR test after 1 month of treatment
by sandy craine (Sep 27)

Give yourself and your body some time. You only started therapy 4 months ago and looks like your response is good, so you can at least comfort yourself with the knowledge that you have responsive

by J. HY Wong (Sep 27)

50mg, I have started on 100mg, but because of the immunosuppression my doctor authorized me with 50mg -- and I keep taking 50 to this date. I have been keeping up the exercises, but still not

by scuba (Sep 27)

What dose are you on currently?

by J. HY Wong (Sep 27)

I started four months ago and I got 6% after two months, I think you are in great shape. But even sprycel 50mg is still causing fatigue, I wonder if 20mg could work.
Category: Treating CML

Replies: 7

Last updated: 27 September 2018
autadesiddharth on 21 September 2018

Category: Treating CML

Replies: 1

Last updated: 26 September 2018

Managing thrombocytopenia
by David Fitz (Sep 26)

Hi there,
I’m really sorry nobody has been able to give you any good answers. Food and blood counts are really not that related. We’d all like to earn some special food to boost our blood

by autadesiddharth (Sep 21)

My mother has been in the Blast Crisis for 6 months now. She was currently taking 50mg Dasatinib on an alternate day after few rounds of chemotherapy failed to get her into remission.
She has also
Category: Treating CML

Replies: 1

Last updated: 26 September 2018
autadesiddharth on 12 September 2018

Category: Treating CML

Replies: 3

Last updated: 21 September 2018

Questions about blast crisis in CML
by Poppert (Sep 21)

I’ve sufflerad from low thrombocytes, but in chronical phase. Paus and start again was the protocol then. Beeing able to keep on medication longer and longer sounds like good news. I hope it

by autadesiddharth (Sep 21)

Thank you for your response. I'll follow up on the VitD levels and check with the Doctor.
She has also started experiencing low platelet counts and they dont seem to increase. We are taking 2

by scuba (Sep 12)

On again - off again pulsing of Dasatinib is a standard protocol for dealing with myelosuppression (neutropenia, etc.). Her doctors don't want to give her neupogen ("stimulation" shots) in order to

by autadesiddharth (Sep 12)

Hi,
My mother(52y) was diagnosed with CML in March 17 and was started on imatinib immediately. After 8 months on imatinib she started experiencing evening fevers and chill and body aches. Bone
Category: Treating CML

Replies: 3

Last updated: 21 September 2018
Felix on 10 September 2018

Category: Treating CML

Replies: 7

Last updated: 11 September 2018

What colour is your Imatinib tablet?
by Felix (Sep 11)

Oo don’t like the sound of eye bleeds ,don’t want them !!

by chrissie (Sep 11)

Yes good old generics! I am now on the 4th kind and am wondering what hey will send me next month. I take 300mgs so I have to take 3x100tablets at a time. Intrapharm (white) and Wockhardt (brown)

by sandy craine (Sep 11)

It may be helpful to read our booklet on generic imatinib, you can download it via the homepage. As Alastair has said, for those in the UK, the MHRA has to give a license to any brand of

by Felix (Sep 11)

Thank you Alastair ,you are so knowledgeable on all aspects of CML ,great for us newbies to read .Hope you are keeping well on your lowered dosage . Regards ,Denise.
Category: Treating CML

Replies: 7

Last updated: 11 September 2018
Aamir Gauri on 6 September 2018

Category: Treating CML

Replies: 2

Last updated: 7 September 2018

CML VARAINT TRANSLOCATION t(4;9;22)(p16;q34;q11) BCR-ABL NEGATIVE . IMATINIB AND DASATANIB RESISTANT. PLS AVDICE WHAT TO DO
by r06ue1 (Sep 7)

"BCR/ABL negative or atypical chronic myeloid leukemia (CML) is a rare hematologic malignancy with an estimated incidence of 1–2% of BCR/ABL positive CML. Clinical features of BCR/ABL negative CML

by David Fitz (Sep 6)

Hi Aamir,
You've posted a lot of information, but not much questions. Is there something particular you're worried about or want to talk about?
It is very normal to take hydroxycarbamide for a while

by Aamir Gauri (Sep 6)

DAIGNOSIS: CML
DAIGNOSIS ON 24/05/2018 DUE TO HIGH TLC.
DATE: 24/05/2018 TCL: 147500/CUB.MM
HYDROXYUREA START FROM 25/05/
Category: Treating CML

Replies: 2

Last updated: 7 September 2018
MartinZA on 3 September 2018

Category: Treating CML

Replies: 5

Last updated: 6 September 2018

How to get a haematologist to listen?
by MartinZA (Sep 6)

Hi everyone
Thank you so much to you all for your detailed responses to my question. You have all answered so openly and sincerely, and this has given me so much food for thought. I will

by scuba (Sep 4)

Martin -
1. You are in command of your body - not your doctor.
2. You know most about how you feel - not your doctor.
3. You are surrounded by people (on this forum) who share your disease -

by Romo (Sep 3)

Every few months when I go into my Cancer Clinic
to see my Onc and review my latest PCR results
I sit in the lobby and wait for my name to be called.
It’s a small clinic with 3 DRs and a

by sandy craine (Sep 3)

Hi Martin,
I am sorry to hear you are having a hard time trying to get your doctor to listen. When I was first (officially) diagnosed back in Jan 1999 I was very fortunate to be under the care of
Category: Treating CML

Replies: 5

Last updated: 6 September 2018
Tidal-Life on 5 September 2018

Category: Treating CML

Replies: 1

Last updated: 5 September 2018

Anyone on or been on the Asciminib aka ABL001 Trial?
by LukeW (Sep 5)

Why are you on the trial if you don’t mind me asking? What results exactly did your other TKIs bring? I ask only because I’m in my third TKI in 2 years, so knowing new trials on new drugs are being

by Tidal-Life (Sep 5)

Hi everyone!

Is anyone in here who has been, or is currently signing up for the Asciminib aka ABL001 Trial?
I started the Trial Medication recently and right now I'm curious about blood count
Category: Treating CML

Replies: 1

Last updated: 5 September 2018
Felix on 1 September 2018

Category: Treating CML

Replies: 6

Last updated: 4 September 2018

What’s this new drug?
by r06ue1 (Sep 4)

There is at least a few which should be making it into early trials this year or next. One such example comes from Universities of Glasgow and Manchester:

https://www.

by AndrewRego (Sep 4)

I know they’re currently recruiting for a phase 3 trial in the UK
https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-st...

by Poppert (Sep 3)

What’s the status of ABL001? Has it been tested on humans yet?

by Romo (Sep 2)

There is no end in the parade of new drugs
..that cure diseases.
Especially incurable diseases.
Sometimes researchers in medicine develop
a therapy that gives life to those previously doomed.
Category: Treating CML

Replies: 6

Last updated: 4 September 2018
mrowleym on 28 August 2018

Category: Treating CML

Replies: 1

Last updated: 28 August 2018

What is a Rudga 21 score?
by David Fitz (Aug 28)

Short for Rutgeerts Score, perhaps? It's a Chron's thing, not CML. That's what my quick Google turned up anyway.
David

by mrowleym (Aug 28)

Hi all
On behalf of my mum does anyone know what this is? She has a hospital letter that mentions this but I can't find out what it means and she has CML and Crohns Disease. Thank you - hope
Category: Treating CML

Replies: 1

Last updated: 28 August 2018
trusamandfive on 28 August 2018

Category: Treating CML

Replies: 6

Last updated: 28 August 2018

Dasatinib/Sprycel dosage help please
by LouiseS (Aug 28)

Thanks Scuba . He is taking curcumin and Vit D ...and Quercitin and Vit K2 :) Fingers crossed he will be able to try and reduce again soon.
Louise

by scuba (Aug 28)

Hi Louise - He might try adding Curcumin to his diet and making sure his vitamin D level is in the 50-70 ng/ml range. This may help his Sprycel work more effectively (on lower dose) by helping

by trusamandfive (Aug 28)

It's hard isn't it, I would generally go along with what Drs tell me, but the last month has proved that with something like this unless you are dealing with a Dr who has a lot of experience you do

by trusamandfive (Aug 28)

Thank you so much for that information, it makes perfect sense and I was thinking today as I had the injection, great lets throw out more white cells good and bad, then six hours later taking
Category: Treating CML

Replies: 6

Last updated: 28 August 2018
r06ue1 on 20 August 2018

Category: Treating CML

Replies: 5

Last updated: 24 August 2018

Bride D‌ie‌s of C‌an‌ce‌r Moments Before Her Wedding in the Hospital
by Romo (Aug 24)

If they shipped the order on a flying carpet, I would order the
goods, throw the order in the trash, put my wiener dog on the
flying carpet, and watch the carpet take to the skies.
All the

by Tbrand (Aug 24)

Sure, and promised shipment on a flying carpet.

by Romo (Aug 23)

I also know that Quality Dasatnib was manufactured in India.
https://timesofindia.indiatimes.com/city/mumbai/Interesting-turn-in-Dasa...

And later denied:
https://economictimes.indiatimes.com/

by r06ue1 (Aug 21)

It is true there are a lot of fake, brand name labels in China but isn't that free market economics without restriction?

There was a movie in China that went viral just recently
Category: Treating CML

Replies: 5

Last updated: 24 August 2018
Clarek on 30 July 2018

Category: Treating CML

Replies: 5

Last updated: 14 August 2018

BCR results
by David Fitz (Aug 14)

Hi Clare,
One set of targets which is often discussed as a good indicator is reaching 10% by 3 months. Then 1% at 6 months, and 0.1% by 12 months. These would be considered "optimal" responses

by ColoradoGuy (Aug 14)

I would say as long as you are trending in the right direction you are still good. Mine looked like the following:
64%, 23% (6 months), 1.8% (9 months), 12 month at the end of this month.

by Clarek (Aug 14)

Hi,
I asked about my PCR tests and apparently I've had 3. The results of the 1st one in February was 82%, then May was 22% and this months went down to 2.4%, and I still don't know if this is ok.

by David Fitz (Jul 30)

Hi Clare,
It's common not to have a PCR test (which tests for the existence of BCR-Abl, the fusion protein that drives CML) until 3 months after diagnosis. However, that means you ought to
Category: Treating CML

Replies: 5

Last updated: 14 August 2018
Trevorp93 on 12 August 2018

Category: Treating CML

Replies: 4

Last updated: 13 August 2018

Sprycel 100mg Help with returning of an a eye floater
by Gitel (Aug 13)

How common this is with CML I do not know. Ask your Onc, but do see an ophthalmologist who knows about the retina. Floaters do appear when the ball of fluid in your eye separates from the retina. In

by Trevorp93 (Aug 13)

Hi everyone thanks for getting back to me on this. I went to the emergency room for this and they recently told them that this was a vitreous hemorrhag. I was trying to see if anyone has gone though

by David Fitz (Aug 13)

Hi Gitel,
It sounds like I had similar problems to you. CML made me lose quite a lot of eyesight - I couldn't see things in the centre of my vision very well. For example, I could not read text on a

by Gitel (Aug 13)

I thought eye floaters were related to the retina. When I had them, and they stayed, I was sent to an ophthalmologist who found I had a slight tear in the retina. part of aging. They had healed.
Category: Treating CML

Replies: 4

Last updated: 13 August 2018
knifesl on 3 August 2018

Category: Treating CML

Replies: 9

Last updated: 9 August 2018

Diagnosed May 2018 - Sprycel 100mg (1st month) Sprycel 50mg (after MD Anderson visit)
by scuba (Aug 9)

Hi Susan - Thanks!
On Tom Petty and waiting:
“It was about waiting for your dreams and not knowing if they will come true,” Petty said. “I always felt it was an optimistic song.”
Like waiting for

by knifesl (Aug 9)

Scuba,
I'm very excited to hear your next stop is no drug! I really appreciate the information you provided. Thank you for telling your story, it does really help ease my anxiety. The waiting is the

by scuba (Aug 6)

Hi Susan,
A good reference to know about is the NCCN guidelines for CML:
https://www.nccn.org/patients/guidelines/cml/
This is what doctors who are not experts in the field rely on when treating

by knifesl (Aug 6)

kat73 - Thank you so much for sharing your story. I can't even imagine how frightening it was for you. "An eternity of black hole worrying" perfectly describes how I feel even with all the support
Category: Treating CML

Replies: 9

Last updated: 9 August 2018
RC Kirk on 6 August 2018

Category: Treating CML

Replies: 2

Last updated: 7 August 2018

Early PCR testing is a good idea
by kat73 (Aug 7)

Gitel - Your observations are on point. Also, although I too read it quickly, I couldn't seem to find the TRUE bottom line, which is: what was termed "success"? PCR undetectable?

by Gitel (Aug 6)

Thanks for posting the link. Impressive study. I have only read it quickly. If I understood what I read:
This is a pretty scary article for anyone who has not achieved <10% at 3 months, or

by RC Kirk (Aug 6)

Here's a link to recently published research about PCR numbers. (Found this at the LLS site) I haven't read the whole thing, but it sounds like confirmation that PCR tests should be routine for all
Category: Treating CML

Replies: 2

Last updated: 7 August 2018
Belladoo on 13 July 2018

Category: Treating CML

Replies: 5

Last updated: 1 August 2018

Blast crisis
by LouiseS (Aug 1)

Belladoo, I wanted to reach out and find out how your husband is doing . I have been thinking about you both and hoping you have had some better news since you last posted.
Best wishes Louise

by scuba (Jul 14)

They are learning a tremendous amount regarding T-cells (our immune defense mechanisms) and how T-cells are very much active against cancer all of the time - except when they are not. They are

by Belladoo (Jul 14)

Scuba, thank you so much for your comprehensive reply.
I am very pleased to report that hubby’s doctors must be on the ball with Vitamin D as they have got him on supplements as part of his

by LouiseS (Jul 14)

Belladoo I am so sorry to hear this. I hope you have family and friends close by to support you both.
I would also post on the community section of the lls.org website. Trey (and others )who
Category: Treating CML

Replies: 5

Last updated: 1 August 2018
MartinZA on 27 July 2018

Category: Treating CML

Replies: 4

Last updated: 30 July 2018

Candida: hoax or not?
by MartinZA (Jul 30)

Thank you so much everyone! I think that the very best choice we have as CML patients is to stick with the TKIs and all this other stuff is incidental. Today I heard a discussion about

by JohnFromChicago (Jul 27)

Sounds like a hoax to me, especially the stop TKI part, haha. Although I will say it is interesting that I have always had a facial skin condition called seborrheic dermatitis which is caused

by davewell (Jul 27)

I feel your pain.
The way I solve the problem is, for the most part, not telling people I have CML. I am lucky enough to be generally healthy (I cannot type this with a straight face, I mean, I am

by David Fitz (Jul 27)

"He is encouraging me to stop imatinib and start on his diet plan."

This is the point that I would completely and utterly stop listening to anything he says.
There are of course valid reasons
Category: Treating CML

Replies: 4

Last updated: 30 July 2018
Tedro on 15 July 2018

Category: Treating CML

Replies: 1

Last updated: 15 July 2018

chest congestion
by AlastairC (Jul 15)

Tedro, I believe it can be a side effect of some of the medication. Please tell us when you were diagnosed, what medication you are taking, the daily dose, and any recent test results. It is likely

by Tedro (Jul 15)

Hi,
Is persistent upper chest/respiratory congestion a known problem?
Category: Treating CML

Replies: 1

Last updated: 15 July 2018
SUHAS D.S. on 7 November 2017

Category: Treating CML

Replies: 32

Last updated: 13 July 2018

Recently diagnosed with CML July 2017
by SUHAS D.S. (Jul 13)

Thanks a lot for all your help. CML support has made me so confident that I am able to be positive and also helped me to achieve this result.
Thanks again for your response.
Regards

Suhas.

by AlastairC (Jul 12)

Suhas delighted for you. Hope you and your family are very happy.

by scuba (Jul 12)

Hi David ...
... and a bad test can give a false positive too!
all that means is when PCR's fall below 0.1% - it's noise.

by David Fitz (Jul 12)

Congratulations Suhas!
Great result, but don’t worry about undetectable. Most of us have never got that result, and we’re fine. A really good PCR test will be able to detect a very low number of “
Category: Treating CML

Replies: 32

Last updated: 13 July 2018