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

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
MartinZA on 14 September 2018

Category: Treating CML

Replies: 9

Last updated: 16 September 2018

Update on moving "backwards" from dasatinib to imatinib
by Rosiem (Sep 16)

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive

by Rosiem (Sep 16)

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive

by Rosiem (Sep 16)

Consultant started me on 50mg Sprycel which resulted in neutropenia and then dropped it to 20mg. My transcripts rose from 8% to 9%. Waited until neurophil count rose again. Now we're trying 50mg

by scuba (Sep 14)

I echo Kirk's suggestion. New research strongly suggests that Sprycel works 'better' at lower dose when neutropenia is observed. In addition to alleviating the low cell counts, lower dose Sprycel
Category: Treating CML

Replies: 9

Last updated: 16 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
scuba on 4 May 2018

Category: Uncategorised

Replies: 20

Last updated: 12 September 2018

Could Fasting + TKI 'cure' CML?
by ciprians (Sep 12)

do you know where and in what form we could purchase feverfew?

by tom888 (Aug 14)

Very informative dear scuba. I accidentally found a study about Feverfew. It contains a substance called parthenolide . parthenolide may kill leukemic stem cells according to the following study:

by scuba (Aug 12)

During fasting very little if anything is renewed - stem cells are quiescent. The body is conserving, recycling and clearing.
Upon re-feeding, the presence of food in the system triggers hormones

by tom888 (Aug 12)

Very interesting article you gave. What I did not understand is if with fasting only the HSCs are renewed; With LSC what's going on? Can the number of LSCs be reduced only with fasting? Without the
Category: Uncategorised

Replies: 20

Last updated: 12 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
DawnD on 7 September 2018

Category: Uncategorised

Replies: 21

Last updated: 10 September 2018

Low hemoglobin
by scuba (Sep 10)

In regard to myelosuppression:
Neutrophils are the key white blood cell which protects against bacteria and is watched the closest.
Neutrophils > 1.5 - 8.0 is normal (1500 - 8000 cells/mm^3).

by kat73 (Sep 10)

Yes, Scuba, still friends. My point is that many of us are uneducated as to the differences between mild, moderate, and severe (life-threatening) myelosuppression. For this lack of

by Romo (Sep 9)

My situation worked for me, your situation worked for you.
Not everyone gets severe myelosuppression.
As for being friends, I’ve been married for 30 years
and expect to be married many more

by DawnD (Sep 9)

Thanks Rick! Have a great trip. I am hoping to also be able to travel again. You give me hope! Dawn
Category: Uncategorised

Replies: 21

Last updated: 10 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
anonimouse on 14 February 2018

Category: Treating CML

Replies: 36

Last updated: 9 September 2018

Has anybody been able to reduce their dosage of Sprycel?
by Romo (Sep 9)

I dare say, If there is not a disagreeable bone in my body at this moment!
On-ward to other challenges!

Romo

by RC Kirk (Sep 8)

Yes, I agree with Romo! And, I concur with Scuba!
Sometimes my onc finds me disagreeable, but we're working it out.

by scuba (Sep 8)

I agree with Romo who agrees with Kirk - so that means I agree with Kirk. But I wonder if Kirk agrees with Romo who also agrees with Kirk.

by Romo (Sep 8)

I agree with Kirk.
Sprycel is film coated with I presume a digestible wax.
Formulated to degrade in hydrochloric acid. The Stomach.
When I took my 100mg tabulates I could feel it break up
Category: Treating CML

Replies: 36

Last updated: 9 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 25/05/2018 DOSE: 500 MG THRIC IN A DAY
SAME DAY BLOOD SAME
Category: Treating CML

Replies: 2

Last updated: 7 September 2018
Libby on 6 September 2018

Category: Uncategorised

Replies: 2

Last updated: 7 September 2018

Troubles with Dasatinib
by Libby (Sep 7)

I don't have a heart condition nor pleural effusion. It appears that the toxicity of Dasatinib has caused significant heart problems. My query is has anyone else had this and what

by cmljax (Sep 6)

Do you really have a heart condition or is the high blood pressure due to what sounds like a possible pleural effusion (not uncommon with Sprycel) or stress due to side effects. You need a complete

by Libby (Sep 6)

I've been on 100 dasatinib for 10 months and have just reached 0.124% - that is the good news.
The bad news is that i've had to stop taking Dastinib because 1) I got shortness of breath, 2) CT scan
Category: Uncategorised

Replies: 2

Last updated: 7 September 2018
gaby on 6 September 2018

Category: Uncategorised

Replies: 2

Last updated: 6 September 2018

My cml
by David Fitz (Sep 6)

Ruxolitinib is highly unusual for treating CML. There are some early stage combination studies, but there are no conclusive results.
I am sure your story is very interesting. Monotherapy with a

by RC Kirk (Sep 6)

Hi Gaby,
I've never heard of anyone taking Jakafi for CML. Do you have polycythemia vera or myelofibrosis with your CML? Or are you in a clinical trial?
Glad to hear that it's working for you

by gaby (Sep 6)

I was diagnosed with CML in February 2015. I am on Jakafi which has been working good for me. I started out with 5mg twice daily and about a year ago increased to 10 mg twice daily My main
Category: Uncategorised

Replies: 2

Last updated: 6 September 2018
LukeW on 4 September 2018

Category: Uncategorised

Replies: 6

Last updated: 6 September 2018

My slightly rocky CML road!
by onekayaker (Sep 6)

Good news indeed Luke!
Steff

by Isla D (Sep 6)

Great to hear that the Bosutinib is kicking in and working well. Really appreciate you posting your story!

by LukeW (Sep 4)

Glad to hear the site is helping you too. Hope you’re results come back with good news.

by DawnD (Sep 4)

Hi Luke, Thanks so much for sharing your story. I feel like we are all part of a little family. I am new here but this site is really helping me every day stay strong. Mornings are my worse time. As
Category: Uncategorised

Replies: 6

Last updated: 6 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