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

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Andrewkerry108. on 1 June 2016

Category: Side effects

Replies: 11

Last updated: 23 December 2018

Newbie to CML side effects.
by Kathyp (Dec 23)

Hi , did you look into claiming pip?

by Ben K (Jun 8)

Hi David,
Many thanks for your reply - and yes very mindful of the mental stress too. I have a weekly mindfulness meditation class, a counsellor I see each week and keep in close touch at work

by David Fitz (Jun 7)

Hi Ben,
If that works for you, then great! But be mindful of the mental as well as physical stress CML can put on you and if you have a great employer, they'd much prefer for you to tell them if

by Ben K (Jun 7)

Hi there - I am a newly diagnosed person too and have been on Tasigna for six weeks now. I have had very little time off work - just a couple of half days while I have hospital visits, a day
Category: Side effects

Replies: 11

Last updated: 23 December 2018
DawnD on 21 December 2018

Category: Blood tests

Replies: 2

Last updated: 23 December 2018

Advice needed again
by DawnD (Dec 23)

Hi David, I quess I didn’t explain myself well on the post. Yeah that was the problem, couldn’t tolerate activity and heart rate was too fast. I actually stopped the Spyrcel on my own

by David Fitz (Dec 23)

Forgetting about the numbers for a moment -how do you feel?
Perhaps you are just very sensitive to dasatinib and only need a small dose to manage things. That would be a pretty great outcome.

by DawnD (Dec 21)

Fish and PCR negative after 3 months of Sprycel. Started at 100Mg then down to 60 mg. On 12/4 WBC was 3, RBC 3.4, H:H 11.3/33.5, neutrophils,1380. 12/18 WBC down to 2.5,RBC 2.8, H/H 9.6 / 27.8,
Category: Blood tests

Replies: 2

Last updated: 23 December 2018
Tanya Cuffe on 22 December 2018

Category: Uncategorised

Replies: 11

Last updated: 23 December 2018

Help please!
by Tanya Cuffe (Dec 23)

You are right Gitel I am on my own through this.I will see my doctor ASAP and get referral to specialist.We don’t have university dental training places here so will follow the process I the

by Tanya Cuffe (Dec 23)

You are right Gitel I am on my own through this.I will see my doctor ASAP and get referral to specialist.We don’t have university dental training places here so will follow the process I the

by David Fitz (Dec 23)

I think that's wise advice Gitel.
A maxillofacial surgeon would be one to check out too. One of those took out my wisdom teeth (pre CML).
David.

by Gitel (Dec 23)

Tanya, you need a dental surgeon, not just a dentist. The dentists who refused to pull your tooth were wise. Did they refer you elsewhere? You have CML and an infection, in addition to the
Category: Uncategorised

Replies: 11

Last updated: 23 December 2018
Kenny_K on 25 October 2016

Category: About CML

Replies: 3

Last updated: 19 December 2018

Transcript Type of CML
by Tbrand (Dec 19)

My P190 minor has not shown after month 2 of diagnoses and P210 major is now 0.000

by Job Guerra (Dec 18)

I was actually researching this very thing and came to the same conclusion about having both P210 and P190 transcripts and there being no difference in outcome as long as you have both and not P190

by nigel (Oct 26)

Hi Kenny, like you my cml has a break point of e14a2, my understanding is this is a very common break point. Have a look at the following
http://www.bloodjournal.org/content/114/11/2232

by Kenny_K (Oct 25)

Hello all,
I was diagnosed with CML 6 months ago and have been on Tasigna. I have a question on the transcript type of CML, which have me confused and worried all the time.
I read thru my RT-PCR
Category: About CML

Replies: 3

Last updated: 19 December 2018
Alaina on 15 December 2018

Category: Uncategorised

Replies: 9

Last updated: 18 December 2018

Rockstar Eyeballs
by David Fitz (Dec 18)

They sound great. If someone had difficulty finding them, carmellose sodium drops (0.5%, or 1%) are great for dry and tired eyes as well. They are very lubricating.
David.

by Alaina (Dec 18)

Kat! Thank you!! You're my angel!

by kat73 (Dec 17)

For red, bloodshot eyes, the only OTC eyedrops that have ever worked for me (and they really do!) are Lumify, by Bausch and Lomb. They use a very low amount of an ingredient for treating

by Alaina (Dec 17)

Thanks for responding, Ray! That is the pep talk I give myself when I get overwhelmed. If it weren't for medication, I would've had a very different story--benefits outweigh alternatives:)
Category: Uncategorised

Replies: 9

Last updated: 18 December 2018
JoeyD on 13 December 2018

Category: Treating CML

Replies: 4

Last updated: 13 December 2018

Side effects of nilotinib
by Mona Gard (Dec 13)

I was diagnosed in August of this year but my head itching started before I was diagnosed. After I started on gleevac it stopped. Me personally thinks it was a symptom of the cancer. A

by cmljax (Dec 13)

Hi - I've been on Nilotinib for nearly 27 months - started on 600 mg and had many, many side effects - one was itchy scalp caused by folliculitis, a common side effect of nilotinib. These were

by JoeyD (Dec 13)

Thank you so much for prompt reply. I have tried 2 shampoos but will give Tgel a go!

Had you been on Imatinib first or did you go straight on to Nilotinib? I had several side effects,

by CM-elon (Dec 13)

Hi there...I was diagnosed at about the same time and had a similar issue. Felt like tearing my hair out at times and it kept me awake at times in the night. I'm not sure if it was coincidence
Category: Treating CML

Replies: 4

Last updated: 13 December 2018
scuba on 7 December 2018

Category: Treating CML

Replies: 16

Last updated: 13 December 2018

Curcumin & Vitamin D - interesting research results (from ASH)
by scuba (Dec 13)

Sandy,
Here is the video documenting optimum levels of vitamin D I referred to in an earlier post.
https://youtu.be/z6M1ARtCi6c
The entire video is a great education on vitamin D overall. The spot

by scuba (Dec 13)

Sandy,
It is so sad to see people suffer needlessly when a simple solution like raising ones vitamin D level can do so much.
I have not had a flu or serious cold in more than six years since raising

by sandy craine (Dec 13)

Hi Scuba,
yes, I take your point about the general guidance for D3 levels but.... as I said.... personally I find I have responded better to a higher level which is why I currently like to keep

by scuba (Dec 12)

Sandy,
I would be cautious in raising vitamin D level much above 80 ng/ml. Research has shown (will post link when I find it again!) that ideal level for vitamin D in the blood for cancer and
Category: Treating CML

Replies: 16

Last updated: 13 December 2018
andycat on 24 November 2018

Category: Drug-drug interactions

Replies: 9

Last updated: 13 December 2018

cml drugs
by andycat (Dec 13)

HI, Thank you for your reply. You are lucky that you've had no nasty side affects on changing tabs. a fellow in our cml support group is the same but my friend Ann + I have had

by sandy craine (Dec 1)

We are all CML patients on this website---- including David. Some of us have had CML for a long time and wish to help others with CML, this is why this website exists.
If you are struggling

by RC Kirk (Nov 28)

It's good that your doc agreed with reducing the dose to 300mg. Hopefully it will alleviate your side effects. In my limited experience, imatinib has more benign side effects than

by AlastairC (Nov 27)

Hi. I was using the Wockhardt generic imatinib for the last year until I recently stopped taking them following the Destiny trial protocol. I had another generic before that, both through Alcura.
Category: Drug-drug interactions

Replies: 9

Last updated: 13 December 2018
Felix on 10 December 2018

Category: Getting help

Replies: 2

Last updated: 13 December 2018

Personal Independance Payment
by Felix (Dec 13)

Hi David ,thank you for taking the time to reply.Ihave had a quick look ,trying to get any benefit is difficult somebody always gives you a hard time so you just give up,but when you are ill it will

by David Fitz (Dec 12)

Hi Denise,
Sorry you haven’t got much of a response here - perhaps a topic people don’t have much experience with.
Have a look at the “CML UK” Facebook group. There are

by Felix (Dec 10)

Hi all ,Has anybody applied for this benefit and been successful. I am nearly 62 and 1 year since diagnosis,I don’t have a job now I just haven’t got the energy ,and with all the
Category: Getting help

Replies: 2

Last updated: 13 December 2018
Mona Gard on 10 December 2018

Category: Uncategorised

Replies: 2

Last updated: 13 December 2018

Stomach bloating
by Mona Gard (Dec 13)

Thanks John. I guess ill find out for sure at drs visit. I have a hernia and gallbladder issues for years so maybe meds interfering with that. Im only 4 months since dx so still pretty nervous on

by johnw1001 (Dec 11)

Hi there,
Gleevec or imatinib is well known for the GI-gastro intestinal issues associated with it and currently I am going through one of those episodes where it is necessary to be very careful

by Mona Gard (Dec 10)

Is this another side effect to gleevec? Stomach bloating? I have a Dr appt end of Dec with my family Dr but was wanting your thoughts on this. Thank you
Category: Uncategorised

Replies: 2

Last updated: 13 December 2018
fiona vaughan on 6 December 2018

Category: Uncategorised

Replies: 11

Last updated: 12 December 2018

frequency of follow up? What’s normal?
by alliswell (Dec 12)

@Fiona
your concerns are well founded..
as RC KİRK mentioned , for the first two months monitoring should be more frequent. at least for CBC.
according to prescribing information of TASigna Revised

by AF (Dec 7)

I am treated in Middle East and I have the same problem. I always have to try really hard with my doctor to get a pcr test. Most recently I have come off my medication and doctor still refuses to do

by David83 (Dec 6)

Hi Fiona,
Just a quick one to add from my experience and a scenario where I’ve been lucky I’ve been monitored closely.
It’s good to make sure you keep an eye on your complete blood

by David Fitz (Dec 6)

Fiona,
One thing worth knowing about PCR tests is that they are difficult to compare between different labs - even when you factor in the "international standard".
So ideally you
Category: Uncategorised

Replies: 11

Last updated: 12 December 2018
Tanya Cuffe on 20 November 2018

Category: Uncategorised

Replies: 12

Last updated: 12 December 2018

Can any supplements help hair grow back?
by sandy craine (Dec 12)

Tanya,
please do not share your private email on this forum. This site has open access so anyone could use your email for their own purposes. If you would like to contact individual members of this

by Tanya Cuffe (Dec 11)

Thanks for that!you are kind and it made me smile! My email ************* if you want further contact.
Tanya

by kat73 (Dec 11)

Tanya - Good for you for the sobriety! This is huge. This is succeeding at living.
I was going to add to my prior message and then forgot, but now it seems pertinent: I find

by fiona vaughan (Dec 11)

Hang in there Tanya. You’ve come a long way.
Category: Uncategorised

Replies: 12

Last updated: 12 December 2018
Mick E on 10 December 2018

Category: About CML

Replies: 2

Last updated: 11 December 2018

Imatininib and heart failure
by Mick E (Dec 11)

Thanks for the reply John
thats pretty much what I have learned from the various sources I have found on the web. Always better though to get it from people who have similar experience.

by johnw1001 (Dec 11)

Hi Mick,
Many years ago I asked my specialist whether imatinib would have an adverse effect on the heart and he said if one had a previous healthy cardio-vascular system there should be no negative

by Mick E (Dec 10)

Hello to All
i was diagnosed with CML 5 months ago and have been frequently reading posts in this forum which have been very useful in coming to terms with what the condition causes and possible
Category: About CML

Replies: 2

Last updated: 11 December 2018
fehr on 24 February 2009

Category: Uncategorised

Replies: 11

Last updated: 11 December 2018

300mg Imatinib
by Mick E (Dec 11)

I was recently lowered to 300mg due to having a worrying period of depression. The lowered dosage has certainly helped with reducing it but the other side effects remain the same for me.

by kat73 (Dec 7)

Sue - I don't know how you've lasted this long. I was miserably sick every day I took Gleevec, for two years. I was continually told "most people tolerate the drug very well

by teddyb (Dec 7)

Better late than never i suppose......
I found this interesting study comparing outcomes for 200mg, 300mg and 400mg doses of Imatinib over many years.
https://onlinelibrary.wiley.com/doi/pdf/10.1111

by fehr (Feb 28)

Sandy, I do have confidence in Hammersmith and I am considering this seriously. I don't think my side-effects are nearly as bad as some, for instance Sue above, but it would be nice to reduce them
Category: Uncategorised

Replies: 11

Last updated: 11 December 2018
DawnD on 10 December 2018

Category: Children & young people

Replies: 4

Last updated: 11 December 2018

PCR test
by DawnD (Dec 11)

I Know so fast! Excited and gonna go for the decrease. Thanks so much CMlJax.

by DawnD (Dec 11)

Totally agree Scuba. Thanks so much for your support and great advice!

by scuba (Dec 11)

Congratulations Dawn - you are in a very good place.
Your CML is very sensitive to sprycel and it worked brilliantly for you.
You should definitely consider lower dose so you can minimize side

by cmljax (Dec 10)

Wow - way to go Dawn. I though I was fast - took me 6 months to get to <.003% PCR, which is as close to negative as you can get without being negative. I reduced dose at 5 months to 450 mg
Category: Children & young people

Replies: 4

Last updated: 11 December 2018
Gitel on 6 December 2018

Category: Uncategorised

Replies: 8

Last updated: 10 December 2018

Tooth extraction, below normal platelets. advice please
by kat73 (Dec 10)

Actually, Gitel, your experience is very common after an extraction, for anybody. Apparently, it's very important to get past those initial crucial hours (a day, two? I forget) without

by Sid35 (Dec 10)

Hello Gitel,
I am so sorry to hear that. I pray for your quick recovery.
Regards

Sid

by Gitel (Dec 9)

Update
tooth pulled with no problem in extraction. Easy

although my platelets were 113, the socket kept bleeding for 8 hours. Large Gelatinous clots
Because it was Saturday, ended up

by Gitel (Dec 7)

Thanks to all of you who replied. I feel calmer. The medical consensus seems to be that 50 is OK for dental work, although they took me off Sprycel for 2 weeks when I dropped to 70 a few months ago
Category: Uncategorised

Replies: 8

Last updated: 10 December 2018
M.ashcroft on 8 December 2018

Category: Treating CML

Replies: 4

Last updated: 10 December 2018

Vitamin D & CML
by M.ashcroft (Dec 10)

Hi David thanks for your advice I do as you suggest

Mike

by David Fitz (Dec 9)

It should also be trivial for your haematologist to add a Vit D test to your next routine bloods. Just ask next time.
David

by M.ashcroft (Dec 9)

Hi Kali

Thank you for your feedback I will speak with my GP about this and ask to have my vitamin D tested

Kind Regards

Mike A

by kali (Dec 9)

I have learned from others on here that Vitamin D plays a significant role in helping our immune system.
I have had low vitamin D for years and have just recently been able to get it into the
Category: Treating CML

Replies: 4

Last updated: 10 December 2018
Mark6899 on 9 December 2018

Category: Uncategorised

Replies: 2

Last updated: 10 December 2018

True remission?
by AlastairC (Dec 10)

Mark, Prof Richard Clarke gave the latest information on stopping treatment at the Patient Day in September. You can listen to his talk from the link to the patient Day on the home page. There is

by RC Kirk (Dec 9)

Welcome to the CML Support forum Mark.
There are several theories for CML cures that researchers are working on. There hasn't been a cure for all of us yet. Some people have been

by Mark6899 (Dec 9)

I am currently 38 and have had this disease since my early 20's. Just wondering if this will ever truly go away?
Category: Uncategorised

Replies: 2

Last updated: 10 December 2018
kali on 2 December 2018

Category: Uncategorised

Replies: 24

Last updated: 10 December 2018

Pleural Effusion
by kali (Dec 10)

Thanks for the information!

by scuba (Dec 10)

This is what I take:
https://images-na.ssl-images-amazon.com/images/I/71YbPlEx7PL._SX522_.jpg
One a day in summer (with food).
Two one day in winter followed by one the next day.
I tend to take

by kali (Dec 10)

The vitamin D3 I take are drops (I didn’t mean sublingual). They are supposed to absorb through your system better. But anyway let me know what type you take. It is worth trying something

by kali (Dec 9)

What brand do you take? Is it a gel or pill? Is it small?
Category: Uncategorised

Replies: 24

Last updated: 10 December 2018
Rick B on 2 December 2018

Category: Uncategorised

Replies: 5

Last updated: 6 December 2018

Feeling somewhat normal?
by Joe Hoffman (Dec 6)

hi rick i have been on glevec for eighteen years lots of leg cramps my teeth are falling out lose of some energy some bone pain but it beat a dirt nap i still make fire wood twice a week i do

by Rick B (Dec 5)

Thank you all for your replies. I appreciate it!

by kat73 (Dec 3)

Rick - Keeping in mind that mine is just one experience, I never had a good day on Gleevec and I took it for two years. I got to the point where I questioned what was the point, if living felt

by Nimbus2 (Dec 3)

I can relate to this, Rick.
I am 62. I started my imatinib on 21 July. My measurements are within target but are poor compared with yours, my FISH at 12 weeks is 15% and PCR 17%.
My side effects
Category: Uncategorised

Replies: 5

Last updated: 6 December 2018