CML Horizons 2024 Videos and Presentations

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

David83 on 29 August 2019

Category: Uncategorised

Replies: 0

Last updated: 29 August 2019

DreamLab - help fight cancer
by David83 (Aug 29)

Hi All,
My friend works for Vodafone and he recently informed me about a new phone app that’s been developed which allows us to use our devices to help cancer research. In short, you download
Category: Uncategorised

Replies: 0

Last updated: 29 August 2019
HKBails on 26 August 2019

Category: Organising your life

Replies: 5

Last updated: 27 August 2019

Essex cml patients
by Felix (Aug 27)

Hello Huma,Us CML ERS positively rattle with the supplements we take,vitamin D 3,vitamin k2,B12,Magnesium,Turmeric,Fish oil ,Selenium look back thru previous posts to find more information about

by HKBails (Aug 27)

Thanks Denise, that’s pretty much how I feel and struggle to get simple day to day tasks done. I feel I need tests but don’t have time so I try to keep going but then it woes me out the

by HKBails (Aug 26)

Thanks for the information that’s really helpful. Glad to hear life does eventually return to almost normal as I’m really struggling at the moment. I will ask my consultant about sprycel

by kat73 (Aug 26)

Couple of things. I was pole-axed by fatigue on imatinib; on sprycel the fatigue was halved, at least. Might be your experience, too. Another hope, if you eventually can reduce
Category: Organising your life

Replies: 5

Last updated: 27 August 2019
DKurup on 23 August 2019

Category: Treating CML

Replies: 2

Last updated: 25 August 2019

Stopped Imatinib under Self Prescription.
by DKurup (Aug 25)

Thank you Alaistair.
I did explore the option to ask for Wockhardt, but the pharmacist kept pushing for Accord (not sure why).
Eitherways, here I am and looking for my first blood test in 2

by AlastairC (Aug 23)

I wonder if it might have been worth trying 200mg of the generic which gave you the least side effect - ?Wockhardt. That would put you on the Destiny protocol which gave a higher chance of

by DKurup (Aug 23)

This one is in continuation to my previous question- https://cmlsupport.org.uk/thread/13192/no-more-sandoz-others-cause-side-... - however thought it is worth a new thread.
After
Category: Treating CML

Replies: 2

Last updated: 25 August 2019
Bmckenna on 22 September 2018

Category: Side effects

Replies: 7

Last updated: 21 August 2019

Has anyone had to stop working due to tki side effects?
by michaelnall1009 (Aug 21)

My sister was diagnosed with CML back in 2010 when she was 46 and was immediately put on Tasigna and had a quick move to remission. However, as you all discuss she did have side effects from

by jab (Oct 8)

I was told potassium and for the most part the leg cramps went away.

by cmljax (Sep 24)

Sorry your TKI is causing so much pain. Side effects often get better with time, but if not, you should discuss switching TKI or if your PCR response is good, reducing dose.

by Philiptibbs (Sep 23)

I have all the same side effects and I'm sorry to say but the only way I cope is Percocet 3-4 times a day and I try and sleep 8-9 hours a night to heal. I do construction and have to work because I'
Category: Side effects

Replies: 7

Last updated: 21 August 2019
Ontasigna on 19 August 2019

Category: Treating CML

Replies: 4

Last updated: 19 August 2019

Hemoglobin dropping consyantly
by Nimbus2 (Aug 19)

Here at the centre of England the range for men is 13.3 to 16.6 g/dL.
I understand that the range for women the top and bottom figures are lower.

by Sueso (Aug 19)

Hi
Hemoglobin Standard Range 11.7 - 16.1 g/dL
Sue

by Ontasigna (Aug 19)

No, I am not sure.
Also I am not aware of "very mild normocytic normochromic anaemia"
Anything to be worried about?

by Nimbus2 (Aug 19)

My HGB has dropped to 111 g/L. My haematologist is virtually certain it is not iron deficiency. Described as "very mild normocytic normochromic anaemia".
Are you sure that your anaemia is
Category: Treating CML

Replies: 4

Last updated: 19 August 2019
Karinne on 9 August 2019

Category: Uncategorised

Replies: 12

Last updated: 19 August 2019

10 months TFR
by Vikram (Aug 19)

Thanks to reply....

by AlastairC (Aug 16)

Hi Vikram, it is just over 9 months since I stopped taking imatinib. I have another blood test next week.
Just to emphasis this is not a quick process. I was MMR for over 9 years on 400mg imatinib

by Vikram (Aug 16)

Hi ALASTAIR
HOW LONG TIME YOU DRUG FREE (TFR)??

by David83 (Aug 13)

Thanks Scuba, that’s great info. Thanks for taking time to research and give us all the info you’ve found.
I think i’ll try K2 along with D3 for a while now. FBC, PCR and biopsy
Category: Uncategorised

Replies: 12

Last updated: 19 August 2019
Crfharris on 17 August 2019

Category: Uncategorised

Replies: 6

Last updated: 18 August 2019

Day 4 on Imatinib
by AlastairC (Aug 18)

I agree with Scuba. Davids Post should be a sticky at the top of the forum as a beginners guide, perhaps with a link to the creation of a new thread to enable the newbie to introduce

by Crfharris (Aug 18)

You’ve done an outstanding job and are providing a great service to those of us who didn’t know what CML was last month.
Thanks!

by David Fitz (Aug 18)

It’s accessible under the “Patient Info” then “Glossary” section too.
I’m planning a bit of a refresh of the Patient Inso section anyway - there’s

by scuba (Aug 17)

David - Excellent! Should be a "sticky".
Category: Uncategorised

Replies: 6

Last updated: 18 August 2019
JacqJohn on 16 August 2019

Category: Treating CML

Replies: 3

Last updated: 17 August 2019

18months into Glivec (Imatinib) - PCR >0.1%
by JacqJohn (Aug 17)

Hi,
im fairly tolerating well in terms of side effects on Glivec (just typically daily loose stools and the standard normal tiredness). Otherwise I’m quite ok. And yes, I’ve

by scuba (Aug 16)

Tasigna and Glivec work the same way in terms of how the drug binds to the active site in CML leading to cell death. Tasigna binds more tightly and is generally more effective than Glivec because of

by AlastairC (Aug 16)

Hi,
How are you doing with side effects on Glivec/Imatinib? I plateaued at about 0.3% for a few months and then got to less than 0.1% in a big jump. I issed the guideline but I didn't know - the

by JacqJohn (Aug 16)

Hi All,
I’ve been on Glivec 400mg for the past 18 months after discovering intolerance to Tasigna during initial diagnosis of CML.
My BCR-ABL results went from 1.4% —> 0.4% and after
Category: Treating CML

Replies: 3

Last updated: 17 August 2019
Sunita Parhar on 16 August 2019

Category: Side effects

Replies: 3

Last updated: 16 August 2019

Ponatinib
by AlastairC (Aug 16)

Sunita you're welcome. Bone Marrow Biopsy is he right thing to do and take decisions when you have the results. Let us know what happens.
Good luck
Alastair

by Sunita Parhar (Aug 16)

Hi Alastair, you’re absolutely right - I got the name of the drug wrong. We are doing a bone marrow biopsy next week to determine mutations. Thank you for the suggestion.

by AlastairC (Aug 16)

Hi Sunita, can you check the name of the drug - I think it may be ponatinib, which is one the recognised newer drugs for CML patients. Also has your husband had any mutation testing done - this

by Sunita Parhar (Aug 16)

Hi, my husband has been on Nilotinib for almost 2 years now but seems to be developing a resistance to it. The doctor has mentioned a drug called Pinotinib as an option. Has anyone been on it? Were
Category: Side effects

Replies: 3

Last updated: 16 August 2019
ThomasS on 14 August 2019

Category: Uncategorised

Replies: 4

Last updated: 16 August 2019

50mg of Sprycel
by AlastairC (Aug 16)

Tom, good call. As long as you don't have an upward drift in the next couple of test results, I think as Scuba says it is perfectly feasible to try 20mg. If you're results are stable below 0

by ThomasS (Aug 15)

Scuba and Alastair, thank you for your reply and all the info. I talked with my Dr and we are going to stay at 50mg and re test in 6-8 weeks. Hopefully the counts will come back to 000. It took me

by AlastairC (Aug 14)

Tom, I'm 100% with Scuba that you don't want to to go back up to 70mg. I have seen this happen on the forum where a lab has a new and shiny piece of equipment which is more sensitive than

by scuba (Aug 14)

Tom,
0.007 is indistinguishable with "undetected" both statistically and in absolute terms. You should continue with your current dose and test again in six weeks to see if there is a
Category: Uncategorised

Replies: 4

Last updated: 16 August 2019
Tanya Cuffe on 14 August 2019

Category: Uncategorised

Replies: 2

Last updated: 16 August 2019

Next level fatigue...
by Tanya Cuffe (Aug 16)

Thank you for that,yes I took a good B today so hopefully will help.I often take ginseng with guarana and then add pseudoephedrine and that keeps me awake but then I don’t sleep!Will try stick

by Tazdad (Aug 16)

I took a really good B vitamin. I used the Now brand and it seemed to help. It Now 100 B complex. It did take a little while to get enough in my system to feel the difference. I still struggle with

by Tanya Cuffe (Aug 14)

Hey friends,Fatigue on 50mg Sprycel getting harder and harder to tolerate. Am exhausted after sweat drenched nights wherein I wake up at least 5 times.Constant fatigue now along with mood issues.
Category: Uncategorised

Replies: 2

Last updated: 16 August 2019
johnw1001 on 15 August 2019

Category: Uncategorised

Replies: 2

Last updated: 15 August 2019

Smile. Amazon-dont forget
by David Fitz (Aug 15)

Thank you John!
The instructions are here:
https://cmlsupport.org.uk/article/help-cml-support-registering-amazonsmile
We don’t get much from this, but everything helps. Between 1st April

by MarkP66 (Aug 15)

Hi John
Great idea and given my wife’s online spend it should yield a nice contribution
Mark

by johnw1001 (Aug 15)

Hi All,
Amazon has a scheme that if you register your charity with them then for every purchase made they will contribute a small proportion -as a regular user my contribution so far totals over
Category: Uncategorised

Replies: 2

Last updated: 15 August 2019
Steven Allan on 12 March 2007

Category: Uncategorised

Replies: 21

Last updated: 15 August 2019

My feet hurt...
by Nimbus2 (Aug 15)

Thank you, Alan, I agree strongly with you considered observations below.
Alan said
With other side effects I am getting, I always ask myself:
1. Is the symptom really due to imatinib?

by AlastairC (Aug 14)

Alan, the threads show up on the forum in the order of the latest post, so if you post on an old thread it comes to the top of the listing again. If you are looking for old threads the search

by AlanG (Aug 14)

Dear Nimbus,
Thank you for your interesting comments, and from others in 2015. There seems to have been a four year silence until now!
The article you referred to was informative, and has set me

by Nimbus2 (Aug 11)

There are papers suggesting that imatinib is a broad-based kinase inhibitor and far less selective than second generation TKIs. The thought is imatinib is acting as a cretatine kinase inhibitor.
Category: Uncategorised

Replies: 21

Last updated: 15 August 2019
johnw1001 on 29 July 2019

Category: Drug-drug interactions

Replies: 3

Last updated: 14 August 2019

Imatinib and radiation therapy-interaction
by johnw1001 (Aug 14)

Thanks for the helpful response as this offers some reassurance that stopping for a few months is not that unusual and also not with too many great risks.
With best wishes
John

by kat73 (Aug 13)

I have had to go off Sprycel several times for pleural effusions to resolve. Starting from MR4 I lost MMR in about 9 weeks off drug. Others have been able to go much, much longer.

by johnw1001 (Aug 13)

Hi All,
It has been decided following a discussion between my hema-oncologist and cliniical oncologist/radiation expert that there is a possibility for the imatinib to potentiate radiation toxicity.

by johnw1001 (Jul 29)

Hi All ,
Has anyone who is on imatinib or another tki ever had radiation therapy of any kind administered at the same time for another malignancy and if so was there any interaction such as
Category: Drug-drug interactions

Replies: 3

Last updated: 14 August 2019
MANNI OBEROI on 12 August 2019

Category: Other conditions

Replies: 4

Last updated: 14 August 2019

Just know that I have cml cp
by MANNI OBEROI (Aug 14)

Thanks shekhar....thanks alot dear

by Shekhar (Aug 14)

Hi Ramandeep,
I was diagnosed when I was at the age of 17, now i have been taking Imatinib for almost 14yrs. I am married have children’s. I have any problem. CML has become a part of life.
Do

by MANNI OBEROI (Aug 12)

Thanx alot David fir your support.....thanx alot

by David Fitz (Aug 12)

Hi Ramandeep,
Do you have any details of the report of your diagnosis? But since you say you are in “CP” - chronic phase, then that is very good news. Have they started you on
Category: Other conditions

Replies: 4

Last updated: 14 August 2019
Tanya Cuffe on 6 August 2019

Category: Uncategorised

Replies: 21

Last updated: 13 August 2019

0.0025 2nd month on 50 mg Sprycel
by scuba (Aug 13)

(apologies for thread hijacking ... )
Pat,
I am trying to find the research I read some time back regarding leukemic stem cell pool (LSC) and CML treatment free remission. What I recall is for those

by hannibellemo (Aug 13)

kat73, is it that obvious?! 😂 I had such a horrible time with Sprycel the first 6 months that the thought of going through that again with yet another TKI ten years later is so depressing!
I

by kat73 (Aug 12)

Yes, Tanya, you can cut the 50's in half with a pill cutter box from the pharmacist. Good luck with the mystery lump. I had an enlarged gland under my jawline and was scared to bits (

by scuba (Aug 12)

My doctor told me taking sprycel every day is preferred over every other day due to its fast metabolism. Taking 20 mg every other day is not the same as 10 mg per day. To achieve half the dose, one
Category: Uncategorised

Replies: 21

Last updated: 13 August 2019
iffat on 12 August 2019

Category: Uncategorised

Replies: 5

Last updated: 13 August 2019

Imatinib and drugs interaction
by iffat (Aug 13)

Thank you

by iffat (Aug 13)

Thank you

by iffat (Aug 13)

Thank you

by johnw1001 (Aug 12)

Hi there,
In addition to Alistairs suggestion I always use the work undertaken by some Swiss researchers who have published in Blood Journal an article titled "Drug interactions with the
Category: Uncategorised

Replies: 5

Last updated: 13 August 2019
OggabetF on 3 August 2019

Category: Uncategorised

Replies: 12

Last updated: 12 August 2019

Hello All - New Member
by scuba (Aug 12)

Sprycel is an SRC inhibitor (in addition to other tyrosine kinases). SRC is important in hair growth regulation (and skin).
https://www.ncbi.nlm.nih.gov/pubmed/19060248
The lower dose you can use

by OggabetF (Aug 12)

WOW! This is really is a small world LoL. I suppose even more for folks with CML!
As a matter of fact whenever I was first diagnosed, my hematologist suggested that I visit Dr. Cortes in

by scuba (Aug 7)

Fred,
How ironic ... my doctor was recently named Director of the Georgia Cancer Center (Jorge Cortes). Look him up. I don't know if he will be taking patients, but worth a try for consultation

by OggabetF (Aug 7)

Thanks for the response Scuba!
I wonder if I could have your oncologist consult with mine concerning the dosage adjustments/reductions?
My next scheduled visit with my oncologist is in 6
Category: Uncategorised

Replies: 12

Last updated: 12 August 2019
Eda on 25 July 2019

Category: Treating CML

Replies: 13

Last updated: 12 August 2019

Tasigna - very low pallet count, low white cells count and granulocytes count
by Eda (Aug 12)

Hi Chris,
I did not realise that your wife was also treated in Poland and I am glad to hear that the treatment she received was good.
My mum is being treated by a haematologist who apparently did

by gof (Aug 12)

Dear Edyta,
you can find more deep explanation of the CML in Polish in this Ph.D. thesis: http://www.wbc.poznan.pl/dlibra/plain-content?id=157731
We cannot say bad word for my wife's

by Eda (Aug 11)

Hi David,
Thank you for sharing that with me. She has had two biopsies so far so one would hope that any additional abnormalities would have been discovered... However, during my dad's very long

by Eda (Aug 11)

Hi Chris,
Thank you very much for your response & for the links. It is really really helpful.
I was waiting for my mum to obtain a copy of her latest molecular test results (QPCR). It was done
Category: Treating CML

Replies: 13

Last updated: 12 August 2019
AlanG on 11 August 2019

Category: Uncategorised

Replies: 1

Last updated: 11 August 2019

New member to Forum
by Sueso (Aug 11)

Hi
Welcom to the CML support .Nothing impossible ,you will win the bottle over CML soon.
Good luck
Sue

by AlanG (Aug 11)

Hi everyone. My first post on the Forum. I was diagnosed with CML on Maundy Thursday this year. An astute GP decided to do a blood screen as I had a number of odd symptoms and the next day
Category: Uncategorised

Replies: 1

Last updated: 11 August 2019