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chloe870 on 10 September 2018

Category: Drug-food interactions

Replies: 7

Last updated: 24 September 2018

Fasting on Nilotinib
by chloe870 (Sep 24)

Thank you to both of you for all your insight and information. I really hope my journey is as positive as both of yours.

Many thanks

by alexmcpee (Sep 12)

Hi again Chloe,
I had a complete haematological response (chr) in about 3 weeks! This means all my blood levels were normalised. And have been normal for 5 months truly amazing drugs.
I recently had

by cmljax (Sep 12)

I reached MMR in 90 days and my current level of <.003% in 180 days and have maintained that level of response for the past 17 months. The dose reductions occurred from 5 months through 12

by chloe870 (Sep 11)

Hi Cmlijax,
Thanks for your reply. It’s great that you are now down to one tablet a day. Fingers crossed I end up the same way. I’m currently on 2 x 300mg a day, so fasting in the morning and
Category: Drug-food interactions

Replies: 7

Last updated: 24 September 2018
scuba on 18 September 2018

Category: Blood tests

Replies: 22

Last updated: 23 September 2018

"Undetected"
by Isla D (Sep 23)

I'm conjuring up an even smaller 10mg Sprycel tablet for you in my imagination Scuba so you could try 10mg per day for six months before quitting completely.
Also wondering about you getting your

by cmljax (Sep 22)

Thanks Scuba - thought this would be your answer. By the way, I listened in on part of the UK CML conference this morning, and the doc reporting on DESTINY results indicated that he thought

by scuba (Sep 22)

cmljax - He did not provide a source to me, just told me via email on the 5 years being best (instead of two).
He would consider PCR < 0.003% as the same as undetected. Any IS value < 0.01% is

by cmljax (Sep 22)

Scuba: Could you please share the source of your oncologist's data that shows that the length of being undetectable is an independent predictor of success in cessation attempt? Would he consider
Category: Blood tests

Replies: 22

Last updated: 23 September 2018
gazhowell on 19 March 2014

Category: Uncategorised

Replies: 7

Last updated: 21 September 2018

Anaemia from Imatinib for an athlete
by AlastairC (Sep 21)

Hi Gaz. Just realised this original post is some years ago. Can you update me - I reduced to 200mg a year ago. Thanks

by ffiorellino (Sep 21)

Hi Gazowell,
I read your post of few years ago: I'm on the same page, because I like to do trail running on the Alps, but I was found positive to CML and am fighting to combine the two things. I

by cmlblogger (Mar 21)

Hi Gaz - cannot help on the issue
but saying hello from another runner (although not very fast), took up running a few years ago and now try and go for a run every few days (not always possible)

by gazhowell (Mar 20)

Thanks Sandy - I think the fact that I would only go to 200mg a day for 12 months is particularly appealing. With frequent PCR tests it seems very low risk but the benfits could be great.
Hopefully
Category: Uncategorised

Replies: 7

Last updated: 21 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
Jason Graves on 15 September 2018

Category: Uncategorised

Replies: 16

Last updated: 21 September 2018

Bone marrow transplant.
by David83 (Sep 21)

Hi Jason,
Thats great news about your wife, hopefully now she is at home and on Gleevec the results will just keep getting better. As a newbie CMLer myself and also on Imatinib (generic form of

by RC Kirk (Sep 21)

That's great news Jason! I'm glad you found this forum. That's why we hang out here, to help each other.
Hopefully the Gleevec will be kinder to her than the hydrea was. I didn't

by Jason Graves (Sep 21)

Hello everyone. My wife was released from the hospital and was told she could go home. I just thought I’d post an update on are situation. She’s doing good. All her blood work results are coming

by RC Kirk (Sep 21)

Jason, I found this information today about Hydroxyurea:
The side effects of Hydroxyurea and their severity depend on how much of the drug is given. In other words, high doses may
Category: Uncategorised

Replies: 16

Last updated: 21 September 2018
Mona Gard on 18 September 2018

Category: Uncategorised

Replies: 6

Last updated: 21 September 2018

Chronic fatigue
by Mona Gard (Sep 21)

Thank you. I know what you mean tho, I was fine coming to work then boom it hits. I work a fast place retail and could run circles around everyone. Now I feel like im letting everyone down. Hey don'

by kat73 (Sep 19)

I was 58 when I started on Gleevec. The fatigue was overwhelming and never went away. After two years, I switched to Sprycel and it got noticeably and significantly better, although it's

by Felix (Sep 19)

Hi Super Woman, you have probably spent most of your life so far running around and caring for your family and everyone else, well now its time you cared for yourself a lot more and let others do a

by jason77 (Sep 19)

I was dx last year on my 40th b day and have been on tasigna for about a year, chronic fatigue has never went away yet for me.
Category: Uncategorised

Replies: 6

Last updated: 21 September 2018
blueyes74 on 17 September 2018

Category: Uncategorised

Replies: 10

Last updated: 18 September 2018

Going for TFR
by cmljax (Sep 18)

The results of that study are indeed remarkable and should give many of us great hope, particularly those who are just beginning or have sustained MR4.

by AlastairC (Sep 18)

Thanks for posting that link. Looking at it I am a bit gobsmacked - no less than eight of the authors listed on that paper are on the speaker list for the patient day in Birmingham on Saturday.

by cmljax (Sep 18)

See below for summary of Destiny:
https://learningcenter.ehaweb.org/eha/2018/stockholm/214524/richard.clar...
Note that time of treatment and depth of response (MR4 vs. MMR) were both independent

by blueyes74 (Sep 18)

Back in 2009 i was told i'd be taking pills for life unless a cure came along. I'd been undetectable for most of my results bar the odd 0.001 or 0.003. I wanted to stop back in 2014 but
Category: Uncategorised

Replies: 10

Last updated: 18 September 2018
Romo on 13 September 2018

Category: Uncategorised

Replies: 4

Last updated: 18 September 2018

The next Medical Trend
by David Fitz (Sep 18)

Sounds exactly like what someone from the planet Xitar would say! 😂😂😂

by Romo (Sep 17)

I never heard of planet Xitar.
I think you made this up.
Romo

by scuba (Sep 15)

People from the planet Xitar can get you excited.
Romo is from there. So be careful.

by DawnD (Sep 15)

And here I was getting very excited!!
Category: Uncategorised

Replies: 4

Last updated: 18 September 2018
Romo on 18 September 2018

Category: Uncategorised

Replies: 1

Last updated: 18 September 2018

Everyday a new idea.
by Felix (Sep 18)

Hi Romo,Another idea I read yesterday,”Cockle Chemo” , saw this on Sky News .The sugars taken from these shellfish could cure some cancers particularly in children ,this is a study from

by Romo (Sep 18)

https://www.sciencedaily.com/releases/2018/09/180912133528.htm

Quote"
Omacetaxine mepesuccinate is a protein synthesis inhibitor,
FDA approved to treat chronic myeloid leukemia.
When the
Category: Uncategorised

Replies: 1

Last updated: 18 September 2018
Anne Roche on 15 September 2018

Category: Uncategorised

Replies: 4

Last updated: 17 September 2018

Side effects of imatinib
by kat73 (Sep 17)

Drastic hair thinning - check. Texture change to fine and wispy - check. And increased speed in growing length - check. So, basically, the worst of all possible worlds: I

by alexmcpee (Sep 17)

Hi I have been on Tasigna for 5 months and have noticed hair thinning and the texture is defo not the same. Its not drastic yet but its defo felt by me for sure.

by jason77 (Sep 15)

I have quite the opposite effect. I have been on Tasigna for 12 months and my hair grows faster then before averaging a little over an inch a month. It does not make sense to me as hair thinning/

by Felix (Sep 15)

Hi Anne, My hair was thinning 12 months before I was diagnosed with CML that’s why I went to the doctors thinking it was my thyroid dipping , I was sent for blood tests .I have been on Imatinib for
Category: Uncategorised

Replies: 4

Last updated: 17 September 2018
SusanL on 14 September 2018

Category: Uncategorised

Replies: 4

Last updated: 16 September 2018

Below normal levels of IGG, IGM, IGA
by SusanL (Sep 16)

Thank you for responding. I have had these tests before the gleevec and they were always normal.

by SusanL (Sep 16)

I have found in medical research that Imatinib can cause the lowering of IGG IGA etc.

by Nimbus2 (Sep 15)

I think that the word to Google are "Immunoglobulin A Deficiency". The following may be helpful, but there are no references to particular drugs. Immunoglobulin A Deficiency seems to be more

by RC Kirk (Sep 15)

Sorry to say, I have no idea. I don't think I've ever had tests for those. Have those tests been part of your normal blood workup, or just a one time thing where they were found to be
Category: Uncategorised

Replies: 4

Last updated: 16 September 2018
Bmckenna on 14 September 2018

Category: Side effects

Replies: 3

Last updated: 15 September 2018

It's been 2 years on gleevec
by onekayaker (Sep 15)

Barb,
My one on one support survivor contact who has been on gleevec 17 years drinks pickle juice for the cramps. When she travels she gets leg cramps and then she eats mustard packets.

by Bmckenna (Sep 14)

Hi Kirk,
ill talk to my oncologist about this. Thanks SO much for the reply!

by RC Kirk (Sep 14)

Hi Barb,
You might try going back to Sprycel at a low dose if your numbers are good. I'm taking 20mg per day, so far it's been working better than imatinib did.
Kirk

by Bmckenna (Sep 14)

Hi All,
i first posted on here in 2015 after my dx of CML. I was started on sprycel and while my numbers went down well the side effects on bone pain muscle pain joint pain and headaches were
Category: Side effects

Replies: 3

Last updated: 15 September 2018
Rick B on 8 September 2018

Category: Uncategorised

Replies: 6

Last updated: 14 September 2018

Wicked mouth sores
by Romo (Sep 14)

Do you need a prescription for magic mouthwash?
"Interested in making homemade Magic Mouthwash or Magic mouthwash OTC?
All you need is equal parts of liquid benadryl and maalox.
If you are trying to

by Rick B (Sep 14)

Onc prescribed magic mouthwash. It works! Thanks to you all.

by cmljax (Sep 11)

Started on 600 mg Tasigna and about 6 months into treatment I had a series of swollen salivary gland incidents all followed by multiple mouth sores. I have used magic mouthwash (without the

by kat73 (Sep 10)

Sorry to tell you the Bill Clinton eyes will never go away as long as you are on imatinib. They get a little better on doses lower than 400 mg. But it is a signature SE of Gleevec.
Category: Uncategorised

Replies: 6

Last updated: 14 September 2018
Tanya Cuffe on 11 September 2018

Category: Children & young people

Replies: 8

Last updated: 13 September 2018

Please advise
by Romo (Sep 13)

Depression is the other side of CML.
What depression does is slow down
body energy. And this allows disease
to take advantage of lower energy.
Disease is an evil force that will destroy

by kat73 (Sep 13)

Tanya - Sandy, Alistair, Scuba - all have given you the correct advice. I would only add that I also had severe depression and fatigue on Gleevec, and this all got much, much, much better on

by Romo (Sep 13)

Yes, I congree, That’s just trendtabulous!
Romo

by scuba (Sep 13)

Tanya,
Alastair and Sandy are absolutely correct. There is no difference in your results.
In fact, any PCR measure below 0.01% is indistinguishable from PCRU (i.e. 'undetected'). Many false
Category: Children & young people

Replies: 8

Last updated: 13 September 2018
Mona Gard on 7 September 2018

Category: Uncategorised

Replies: 15

Last updated: 13 September 2018

Bumps and severe itchy scalp.
by Celsus291 (Sep 13)

Hi, I dont know if this will be helpful to you, but one of my friends is using this medical herb for her illness. It is still a taboo for us, but I have read many articles about medical

by teresak (Sep 12)

Hi I'm new to this forum and already have learned something new. I did not realize that my bumpy itchy scalp could be due to the Sprycel that I am taking. Thanks for the information!!!

by DawnD (Sep 11)

Congratulations David!! So happy for you!!

by Romo (Sep 11)

My scalp itch and discomfort was from treatment.
I can only tell you what I did.
I cut off all my hair. To a buzz-cut. This helped my scalp to breath.
A hair dresser friend of mine
Category: Uncategorised

Replies: 15

Last updated: 13 September 2018
Sonia0609 on 4 June 2018

Category: Uncategorised

Replies: 9

Last updated: 12 September 2018

12 Month Blood Results
by Job Guerra (Sep 12)

In my opinion I would not be concerned that you are not responding because you are trending in the right direction. I would be looking at 0.1 at 12 months which would be great. You may

by Poppert (Sep 7)

I’m not quite ”on target” either. But there is progress.
Dx in January at age 44, BCR-ABL: 114%
3 month: 12.7%
6 month: 1.3%
WBC 323 at dx and blasts 3%, huge spleen.
I’ve had two breaks, two

by Job Guerra (Sep 7)

Sonia - Just wondering how your latest results went? I have received my 12 month results and it looks like I did not reach the desired 0.1. Here is my results for those of you who just

by cmljax (Jun 9)

Sonia - Keep the faith. As everyone has said you will likely get there - too soon to change the course or for BMB unless you have 2 upward trend PCR's in a row that equate to 1 log or more increase
Category: Uncategorised

Replies: 9

Last updated: 12 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
DawnD on 9 September 2018

Category: Uncategorised

Replies: 9

Last updated: 11 September 2018

Question regarding x rays and scans
by DawnD (Sep 11)

Hi Sandy, I agree. Gonna try a little massage and see if helps. Thanks for reaching out. Dawn

by DawnD (Sep 11)

I agree with you Isla. Too many X-rays! Weighing my options for sure. Thanks for responding. Dawn

by sandy craine (Sep 11)

Dawn, maybe your neck pain would respond to some chiropractic/osteopathic manipulation? Or even a plain old massage?
Sandy

by Isla D (Sep 11)

Important to ask what they are looking for with the CT scan and also, how will the results of the CT scan be used to make decisions about treatment?
I'm upset that I've had X-rays in the past
Category: Uncategorised

Replies: 9

Last updated: 11 September 2018
Steven Davies on 6 January 2011

Category: Uncategorised

Replies: 4

Last updated: 10 September 2018

Problem logging on
by David Fitz (Sep 10)

Hi Steven,
I can't reproduce this when I try. It would really help if you could tell me the exact steps you took to show this issue - the most important thing is the web page addresses at each point

by David Fitz (Sep 10)

Hi Crystal,
If you've managed to post a message, it means you must be logged in correctly.
If you want to change your password, you click on "account" (top right on desktop, under the "menu" button

by Crystal Louise (Sep 10)

Hi Sandy, I am not sure if I’m missing it but I’ve had to click the reset password button twice and then when I’m in my account I can’t find the area where my pswd would be. Help please.

by sandy craine (Jan 7)

I am sorry some of you have had difficulties logging on to the forum. If you have difficulty logging on then please use the option of asking for a new password. You will then be sent a one time
Category: Uncategorised

Replies: 4

Last updated: 10 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