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Rayyana123 on 14 June 2022

Category: Uncategorised

Replies: 7

Last updated: 19 June 2022

NEWLY DIAGNOSE
by JoeP (Jun 19)

EvaH is right, Try to stick to the prescribed regimen. Remember these drugs are highly scrutinized by lengthy trials. Yes the initial side affects can smack you to the floor but most go away

by SueAngel (Jun 18)

Hi Rayyana123
I completely understand where you are coming from. I was just as anxious at starting at 100 mg of Sprycel. Nevertheless I took a chance and started at that dosage. I experienced

by Rayyana123 (Jun 14)

Thank you I decided to take the 100 mg , my doctor said I could take it every other day to see if that works which would equal 50 mg

by Kamil (Jun 14)

Its becoming a more common practice in the U.S to start patients on a lower dosage, but not so common in Europe. The reply i recieved when enquiring about a lower dosage
“we will not routinely
Category: Uncategorised

Replies: 7

Last updated: 19 June 2022
cousineg2 on 18 June 2022

Category: About CML

Replies: -1

Last updated: 18 June 2022

EHA 2022 - Some Interesting Abstracts About CML

Category: About CML

Replies: -1

Last updated: 18 June 2022
Vikram on 14 June 2022

Category: Uncategorised

Replies: 2

Last updated: 18 June 2022

cure cancer
by SueAngel (Jun 18)

Thank you Vikram. I didn’t not know that there was a small trial. I looked it up because you mentioned it. I too hope CML and all cancers can be fully cured. While taking a pill

by EvaH (Jun 14)

Vikram ... for the love of all that's holy... CML is as cured as its going to get !!
TKIs were specifically developed to turn a 100% fatal disease with an average life expectancy of 5 yrs to

by Vikram (Jun 14)

rectal cancer cure in 18 people.
i hope one day CML cancer also cure.
Figger cross..
A trial on 18 colorectal cancer patients in the US found that cancer could be treated without chemotherapy or
Category: Uncategorised

Replies: 2

Last updated: 18 June 2022
cousineg2 on 17 June 2022

Category: Uncategorised

Replies: -1

Last updated: 17 June 2022

ASCO 2022 - Some Interesting Abstracts About CML

Category: Uncategorised

Replies: -1

Last updated: 17 June 2022
mil on 13 June 2022

Category: Uncategorised

Replies: 3

Last updated: 14 June 2022

Miss dose
by mil (Jun 14)

Hi Alastair and Christine,
Thank you both for your answers. I take Imatinib 400 mg per day, my last bcr abl was ok but i had a little increased result if i compared with my previous one but i am

by Christine R (Jun 14)

You should have an information leaflet in your tablet box that should show what to do if you miss a dose. If you don't then you should be able to find the leaflet online.
Most of the TKIs act in

by AlastairC (Jun 14)

Hi. You don't say which of the CML meds you are taking, or what your latest BCR-ABL result is - would be useful to know
The guidance for imatinib is that if you miss a dose you should take it if

by mil (Jun 13)

Hi guys, hope you all are doing great!
I just want to ask something … Yesterday i forgot to take my pill … i remembered at 1 am that i had to take it, so i took it at that time
Category: Uncategorised

Replies: 3

Last updated: 14 June 2022
maxduke on 12 June 2022

Category: Uncategorised

Replies: 1

Last updated: 13 June 2022

Cardiac issues
by An (Jun 13)

Are you currently on dasatinib?If you are in treaent free remission for some time it may not be due to the drug,though no one knows the long term effects.

by maxduke (Jun 12)

Hello, I am a New member.

in 2009 I was diagnosed with CML and was fortunate enough to be placed on the Spirit II dasatinib trial drug. I was on this drug for 6.5 years, at
Category: Uncategorised

Replies: 1

Last updated: 13 June 2022
Ontasigna on 5 June 2021

Category: Treating CML

Replies: 2

Last updated: 13 June 2022

Terrible myscle and joint pain
by An (Jun 13)

My husband has severe joint pains,he is taking dasatinib (100 mg) ,he used to have back pains,but he said the severity of pains increased after starting TKI.
Somethings that helped ,taking vitamin d

by MarkusShiza (Jun 13)

Hi, I've suffered from lower back pain for about 4 years. I've tried all the drugs I've been prescribed, and I can tell you that it's all complete nonsense. And to get rid of back

by Ontasigna (Jun 5)

Hi
I am having very severe muscle and joint pains

Especially from hip to toe.
Its a same pain i haf before diagnosis.
I am on nilotinib since 2.5 ys and am in remission 0.0028(April 2021)
Is
Category: Treating CML

Replies: 2

Last updated: 13 June 2022
Poppy Darling on 13 June 2022

Category: Treating CML

Replies: 2

Last updated: 13 June 2022

CML bloods down from 50 to 10 in two weeks, what does this mean?
by Poppy Darling (Jun 13)

Thank you for this. Yes, I’m on 400mg and I will ask the questions you state; fantastically helpful.

ref diet and side effects, I’m across this.

best

by scuba (Jun 13)

It means imatinib is killing off the CML cells and your white blood count is dropping towards normal. I assume you are taking 400 mg.
You should ask your doctor:
1. What is my FISH level percent?
2

by Poppy Darling (Jun 13)

Hi
Four weeks ago, after no symptoms of CML, but after bloods analysed for a gynaecological issue and hair shedding, further bloods were requested and tests which showed I had CML.
I had been taking
Category: Treating CML

Replies: 2

Last updated: 13 June 2022
cousineg2 on 12 June 2022

Category: Clinical trials

Replies: -1

Last updated: 12 June 2022

UM171 Expansion of Cord Blood Improves Donor Availability and HLA Matching For All Patients, Including Minorities

Category: Clinical trials

Replies: -1

Last updated: 12 June 2022
alexmcpee on 24 May 2022

Category: Uncategorised

Replies: 11

Last updated: 10 June 2022

Latest results - and some positivity for newly diagnosed.
by 17721459 (Jun 10)

Thank you for the information.

by alexmcpee (Jun 4)

Good to here from you Ian! And big congrats on the birth of another baby! Amazing!
Glad you’ve maintained MMR also. It’s a ride for sure: glad that it’s mostly over for you now!

by alexmcpee (Jun 4)

I found this for you
Gastrointestinal Disorders:
Common: acute pancreatitis, abdominal discomfort, abdominal distension, dyspepsia, dysgeusia, flatulence.
Uncommon: gastrointestinal

by ColoradoGuy (May 27)

Congrats on you new addition! Glad to hear you are also trending downwards.
Category: Uncategorised

Replies: 11

Last updated: 10 June 2022
EvaH on 7 June 2022

Category: Children & young people

Replies: 0

Last updated: 7 June 2022

London clinic recommendation
by EvaH (Jun 7)

Hi all
I'm in London for two weeks and overdue on a bcr/abl monitoring.
Do you have any recommendations on where i can get one? Ideally east London.
Category: Children & young people

Replies: 0

Last updated: 7 June 2022
Taper11 on 4 June 2022

Category: Blood tests

Replies: 2

Last updated: 6 June 2022

BCR ABL Increase at 9 Mts
by Taper11 (Jun 6)

Thanks for putting this in perspective Alex, I really appreciate it.

by alexmcpee (Jun 4)

Don’t ever apologise. We all have to air our concerns wether repeated or not, it’s part of our mental healing as much as it is our physical healing.
This thing can bounce around like a

by Taper11 (Jun 4)

Apologies for creating a thread when I know there's so many others on this topic, but I am just looking for some reassurance.

I've been taking 100mg dastinib since September
Category: Blood tests

Replies: 2

Last updated: 6 June 2022
Sd on 2 May 2021

Category: Side effects

Replies: 7

Last updated: 5 June 2022

Thoughts on CBD and Drug Holidays
by JaylonAndersen (Jun 5)

Rich evidence has shown that cannabis products exert a broad gamut of effects on emotional regulation. The pathological expression of anxiety leads to enduring emotional perturbations with a

by EvaH (Jun 9)

I did have a cbd latte once, it made me feel a bit anxious but i think that was my specific reaction to cbd+caffeine and nothing to do with imatanib

by Sd (Jun 8)

Thank you for your comments. You are right..it is hard to find data.

by EvaH (Jun 8)

Ive mixed imatanib and THC and had no issue. I imagine CBD shouldn't be a problem.
Indeed very hard to find data on such interactions.
Category: Side effects

Replies: 7

Last updated: 5 June 2022
Vikram on 30 November 2021

Category: Food & fitness

Replies: 7

Last updated: 5 June 2022

DIP DIET AND CML
by Vikram (Jun 5)

This information is local website...
I am not know dip diat working or not..
I also ask questions...

by Vikram (Jun 5)

Hiii. David,
I know tki is only option....
One youtube video says dip diat help in Cancer....(i know youtube video not 100% trusted )
The information provided here is for reference only.

This

by David Fitz (Jun 2)

Diet does not help CML.
Taking your medication helps CML.
A good diet is good for your health in general, but it will not help your CML really.
I know it feels like being able to help treat your CML

by EvaH (May 21)

You need to learn in detail about your CML.
The basis for the disease is a genetic (but not heritable) mutation. Even replacing your bone marrow would not help.
An adult at 60kg should not be
Category: Food & fitness

Replies: 7

Last updated: 5 June 2022
Alan Locke on 21 May 2022

Category: Uncategorised

Replies: 3

Last updated: 5 June 2022

Thrush
by EvaH (Jun 5)

I suggest you find a reputable yoga practioner who is experienced with full SHANKAPRAKSHALANA
This uses a technique of salt water rinsing of the whole digestive tract followed by 7 days special

by Alan Locke (May 30)

Thank you EvaH
I am very interested in your reply. I certainly have a "western gut"!
Any suggestions for reducing acidity naturally?
I value any reference to yoga life style. Daily I

by EvaH (May 30)

There are medication interaction reference websites which should tell you if flucanazole is ok with imatanib.
Did it clear up?

Coconut oil rinsing is helpful for thrush oral symptoms.
Indian

by Alan Locke (May 21)

Hi everyone, hope you are all doing well and achieving your goals.
I have checked through previous threads for information on thrush. However I cannot find details regarding a one off
Category: Uncategorised

Replies: 3

Last updated: 5 June 2022
VickyK. on 22 February 2019

Category: Side effects

Replies: 34

Last updated: 3 June 2022

Tasigna hair loss
by drudesen (Jun 3)

I did try the Kingsley product - I did not find it to work.
I did though change oncologists who felt my dosage was to high (I was 600mg per day!)
Cut it down to 150mg x2 per day, one in morning and

by RonicaPieper (Jun 3)

When I used Tasigna, my hair didn't fall out much, and even when I noticed it, I just tried to minimize stress and improve my nutrition. But suppose your hair falls out a lot. In that case, you

by Norma_55 (May 21)

Yes, I started getting a hugely itchy scalp, and my hair is fine dry and fizzy..also got a dry scalp.
I was on these tablets for just a couple of months after a month I started noticing

by Norma_55 (May 21)

Yes, I started getting a hugely itchy scalp, and my hair is fine dry and fizzy..also got a dry scalp.
I was on these tablets for just a couple of months after a month I started noticing
Category: Side effects

Replies: 34

Last updated: 3 June 2022
Jmbnccyn on 13 March 2021

Category: Drug-food interactions

Replies: 13

Last updated: 22 August 2022

TKIs and Alcohol ?
by David Fitz (Jun 2)

I believe that no alcohol can be taken during treatment, and I can't tell you if it can affect TKIs.

You believe absolutely wrong! Alcohol with TKIs is absolutely fine, like anyone else in

by Richard42 (May 28)

At my very first consultation after diagnosis my then consultant said about going on imatinib that “the good thing is you can still drink wine, so long as it’s Spanish wine”. He

by Carabinieri (May 27)

I believe that no alcohol can be taken during treatment, and I can't tell you if it can affect TKIs. But I am so categorical about alcohol because I almost died because of alcohol addiction for

by Jmbnccyn (Mar 23)
Category: Drug-food interactions

Replies: 13

Last updated: 22 August 2022
Poppy Darling on 29 May 2022

Category: Treating CML

Replies: 12

Last updated: 30 May 2022

Has anyone tried anti parasitical black walnut, cloves and wormwood? And hair loss
by Poppy Darling (May 30)

Quite! Here's to a long life and few side effects PD

by AlastairC (May 30)

Hi Poppy, if you want to have a look at what else you can do to help on the CML front, it would be useful to get you vitamin D level checked. There is a lot of correspondence on the forum about Vit

by AlastairC (May 30)

Hi Poppy
Not sure whether your radiotherapy might account for it - mine was targeted at an area which included my pelvis where some of the marrow production of white cells happens.
Regardless of

by Poppy Darling (May 30)

Hi

Thanks for replying. I had two bouts of chemo (few side effects) and daily doses of targeted radiation for six weeks. Although the treatment side effects were debilitating -
Category: Treating CML

Replies: 12

Last updated: 30 May 2022
Mw03 on 20 September 2017

Category: Side effects

Replies: 3

Last updated: 25 May 2022

Dental problems
by Iaiconoc (May 25)

Since I have been taking imatinib for a long time, my caries has become very acute, and every 3-4 months, I have to go to my dentist and check my teeth. So yes, because of this drug, there are huge

by chrissie (Sep 22)

Oh yes. After 8 years on Imatinib my teeth are falling out. Is it my age or my medication I wonder.
Best
Chrissie

by Justine (Sep 21)

Sorry to hear it. I have been on Gleevec almost six months. Dental appointment about 2 months ago and everything looked fine. But I do wake up every morning with a dry mouth and unpleasant taste/

by Mw03 (Sep 20)

I have been taking imantinib for over 2yrs now. I have been suffering with dental issues. Has anybody else experienced dental issues whilst taking imantinib?
Category: Side effects

Replies: 3

Last updated: 25 May 2022
Rick B on 27 April 2022

Category: Uncategorised

Replies: 10

Last updated: 24 May 2022

My Situation after Flunking TFR
by Vikram (May 24)

Thanks for reply...
Congratulations...and best of luck....for tfr....

by Richard42 (May 24)

7 years in TFR and continuing (am waiting for my latest bcr/abl). BCR/abl every 4 months. There are quite a few others like me but all had deep responses for a long time and were on treatment

by Vikram (May 20)

Hii Richard....
How many years in tfr?
Tfr still continue?...
Bcr abl reports every 3 months?
Please replay...

by Richard42 (May 12)

This paper is a good summary of the various TFR studies and their outcomes
https://www.haematologica.org/article/view/haematol.2019.242891
Depth and duration of response seem to be factors (newer
Category: Uncategorised

Replies: 10

Last updated: 24 May 2022