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savedbygrace on 9 October 2020

Category: Treating CML

Replies: 6

Last updated: 10 October 2020

New to Imatinib
by Roza (Oct 10)

Many Thanks, your story definitely gives new CMLers like me hope. I know I'm lucky to have great treatment available and to be alive. For many like me, I think a lot of the mental drain in the early

by Tbrand (Oct 10)

5 years on imatinib now and no side effects. After the first 4 months all discomforts disappeared. The medication is killing cancer cells and your body is full of dead cancer cells. Your going to

by Roza (Oct 10)

Hi, I am new to imatinib for three months now and also get bone pain, but mostly in the lower legs around the shins which is manageable around the house but really comes on badly after only a short

by alexmcpee (Oct 10)

I 100% agree that anxiety can exacerbate symptoms and cause new ones. That’s been my experience and I too practice mindfulness and meditation it works wonders for me most of the time. There
Category: Treating CML

Replies: 6

Last updated: 10 October 2020
Jay_b_ce on 25 September 2020

Category: Uncategorised

Replies: 8

Last updated: 10 October 2020

New CML Diagnosis
by Jay_b_ce (Oct 10)

Thank you for the information.
Sorry to hear of the side affects that you experienced on Imatinib but it seems as though Nilotinib suits you well and hopefully will continue to do so.
I have been on

by wshi2001 (Sep 30)

Just give you a quick review. I've been on all three TKIs. For me, Imatinib causes internal bleeding, eyes, mouth and stomach, as well as reduced kidney function. Dasatinib

by Jay_b_ce (Sep 25)

Hi Mark,
Good to meet you on here to and great to hear that you are responding well to Imatinib.
Although I didn't show classic symptoms prior to diagnosis, when looking back I had felt a bit

by MarkP66 (Sep 25)

Hi Jayson
Great to meet you on here. I joined 14 months ago after my diagnosis following a routine blood test. But looking back I had most of the classic signs but put it down to my 55
Category: Uncategorised

Replies: 8

Last updated: 10 October 2020
Sd on 7 October 2020

Category: Side effects

Replies: 8

Last updated: 8 October 2020

Leg aching at night
by Sd (Oct 8)

Yes, it is really muscle pain and not bone pain. I agree about hydration.
Thanks to all for the helpful suggestions.

by alexmcpee (Oct 8)

Yeah I also get the “aches” that you describe not in my legs but my shoulder blades, shoulder and arms. I do find bathing daily in Dr Salts helps massively which might suggest its

by Sd (Oct 8)

This is excellent. I will check out the insurance company to see if they will cover this.

by David Fitz (Oct 8)

Leg massager ... mine is like this. They come in all shapes and sizes. My private health insurance actually paid out for this one near the start of my CML journey over 10 years ago. I still use it
Category: Side effects

Replies: 8

Last updated: 8 October 2020
philmc on 7 October 2020

Category: Side effects

Replies: 2

Last updated: 7 October 2020

Different reactions from different suppliers of the same drug?
by philmc (Oct 7)

Thanks David. I'll check all that info out and raise it with my consultant.

by David Fitz (Oct 7)

Hi Phil,
Zenvita dasatinib is licensed for ALL, not CML ... though of course it's the exact same drug and as I understand it some hospitals in the UK are giving it to CML patients.
The active

by philmc (Oct 7)

Is it possible to have different reactions from different suppliers of drug?
I was doing well for 3 months on Bristol-Myers Squibb tablets, but last month my pharmacist changed them to Zentiva
Category: Side effects

Replies: 2

Last updated: 7 October 2020
bendicco on 16 August 2020

Category: Side effects

Replies: 4

Last updated: 5 October 2020

Thinning hair
by Faith_05 (Oct 5)

Sandy,
Could the values of T4 and TSH be normal, while those of T3 not ?? Because my doctor has only checked my T4 and TSH.
Thanks
Faidra

by Crfharris (Oct 5)

Thanks! I will certainly begin checking.

by sandy craine (Oct 5)

Hair loss may be due to your thyroid not producing the optimal amount of thyroid (T3) hormone.. this can happen for many reasons but can be brought on by prolonged stress/anxiety. If possible you

by Crfharris (Oct 5)

I hope someone replies as I, too, am experiencing the exact same condition. I have been on Gleevec for one year. I am also losing eyelashes on the outer corners of my lids. I am wondering if I might
Category: Side effects

Replies: 4

Last updated: 5 October 2020
On Fire on 6 October 2014

Category: Uncategorised

Replies: 3

Last updated: 4 October 2020

Chronic Myeloid Leukemia Forgetfulness
by pkbera1985 (Oct 4)

Yes, I'm facing the same problem with me. I am under treatment with Dasatinib since last 5 years. Since last 3 years I'm having a issue with my memory and gradually it is increasing. This becoming a

by YoungWithCML (Oct 13)

I have been experiencing this too for about the past 6 months or so, severe memory issues. I think it has to do with high WBC's that are interfering with the central nervous system.
If you're WBC

by sandy craine (Oct 7)

Hi,

It may be that your wife's forgetfulness/confusion- you say this had become more apparent before she received hydroxycarbamide and therefore I assume before she was diagnosed- could be

by On Fire (Oct 6)

My darling wife, 31, has just been diagnosed with Chronic Myeloid Leukemia. Her white blood cell count is 80,000. She was prescribed Hydroxycarbamide for the first week, until bone marrow tests were
Category: Uncategorised

Replies: 3

Last updated: 4 October 2020
vonnie on 1 October 2020

Category: Uncategorised

Replies: 4

Last updated: 1 October 2020

MR
by vonnie (Oct 1)

Thanks again

by alexmcpee (Oct 1)

Amazing congrats. One day maybe TFR for you too if that’s what you want.

by vonnie (Oct 1)

hi it is the second one so thanks very much thats brill

by alexmcpee (Oct 1)

Hi if that’s 5% BCR then no that’s not great if youve been on treatment for sometime. If that’s MMR 5 yes that’s a wonderful result and you can’t get better than that
Category: Uncategorised

Replies: 4

Last updated: 1 October 2020
Sueso on 25 September 2020

Category: Blood tests

Replies: 4

Last updated: 27 September 2020

My selenium is very high
by Sueso (Sep 27)

Thank you for the information.

by scuba (Sep 26)

I would not be surprised if the Brazil nuts are the cause of your higher selenium - and that could be a good thing. But to put your fears at ease - 240 ng/ml is not overly high, and in some labs it

by Sueso (Sep 26)

I`m not taking any supplements ,I asked my doctor if I can take selenium supplement because that she order the blood test for me.
I used to eat 3 piece brazil nuts daily but I stopped on Marsh

by scuba (Sep 25)

Are you taking any selenium supplements or eating foods rich in selenium? (e.g. Brazil nuts)
Category: Blood tests

Replies: 4

Last updated: 27 September 2020
johnw1001 on 23 September 2020

Category: Blood tests

Replies: 4

Last updated: 25 September 2020

RDW Values-in CML and now in Covid
by sbp03 (Sep 25)

Higher levels of RDW (and low levels of haemoglobin) might be associated with Thalassemia. As such genetic condition also increases the ferritin levels, usually it is not recommended iron

by Vijay Kumar Verma (Sep 25)

I have always high RDW and even after 37 months my Pcr 0.126%(IS).so I can correlate the link between high RDW & high Pcr,and difficult to reach Mmr. I will be happy if anyone can shed more

by johnw1001 (Sep 24)

Thanks for the reply and your data.
I have come across reports that use of imatinib might lead to less red cell production and modification to some of the specific counts that we have discussed such

by Nimbus2 (Sep 24)

Hello John
I may very well be in the same position as you with anaemia.
My RDW is within range.
My consultant tells me that she concentrates normally upon four markers: haemoglobin, white blood
Category: Blood tests

Replies: 4

Last updated: 25 September 2020
Justina on 16 December 2018

Category: Getting help

Replies: 22

Last updated: 25 September 2020

Diet for CML patient
by David Fitz (Sep 25)

What did your CML doctor say?

by Maddie (Sep 25)

They want me to take omeprazole for my esophagus issues. Can I take this in between 12 hours apart. I am on 50 mg sprycel
Your thoughts

by Maddie (Sep 25)

They want me to take omeprazole for my esophagus issues. Can I take this in between 12 hours apart. I am on 50 mg sprycel
Your thoughts

by mozart8 (Apr 1)

Thank you so much for your response!
Category: Getting help

Replies: 22

Last updated: 25 September 2020
Vijay Kumar Verma on 24 September 2020

Category: Uncategorised

Replies: 5

Last updated: 25 September 2020

Pcr@37 months
by alexmcpee (Sep 25)

Yes those starting from a higher place it would make sense it would take longer. Like you I am “young” and wbc 330 and massive spleen at diagnosis. Am sure one day we will get there.

by Vijay Kumar Verma (Sep 25)

It may be related with the young age & high WBC. At diagnosis my WBC was 492( normal 4-10) & bigger spleen. Still my RDW is higher than the normal.

by alexmcpee (Sep 24)

Yes like you it can be discouraging and worrying to see higher BCR after several years than most on this forum. Seems we are a select few. It can take many years to get MMR but rest easy knowing

by Vijay Kumar Verma (Sep 24)

Yes sir, earlier I used to get worried about my Pcr reports .fellow Cmlers at Cml SUPPORT UK made me cool,no worry as long as Pcr is going down. Due to covid I stockpile Imatinib till Dec 2020,after
Category: Uncategorised

Replies: 5

Last updated: 25 September 2020
alexmcpee on 22 September 2020

Category: Uncategorised

Replies: 9

Last updated: 24 September 2020

Potential new CML treatment?
by argearge (Sep 24)

Oooh I see, I understand your comment.
Indeed, I know someone who was intolerable for all TKI,s. He had a Allo-SCT, but the CML returned ...

by alexmcpee (Sep 24)

TKI works for the “vast” majority but we have to be mindful their are some in the region of 5-10% of people that they don’t work on! That’s why sometimes I feel bad harping

by argearge (Sep 24)

Do you mean we do badly on TKI ?

by alexmcpee (Sep 24)

Well technically we need both. That way we cover those don’t respond to TKI Those that do and potentially cure us all one day. The latter bit I’d imagine is a long way off. Who knows.
Category: Uncategorised

Replies: 9

Last updated: 24 September 2020
Vijay Kumar Verma on 24 September 2020

Category: Uncategorised

Replies: 0

Last updated: 24 September 2020

Pcr@37 months
by Vijay Kumar Verma (Sep 24)

Pcr 0.126%(IS) @ 37 months.
Category: Uncategorised

Replies: 0

Last updated: 24 September 2020
Justine on 22 June 2020

Category: About CML

Replies: 1

Last updated: 22 September 2020

Unusual fatigue and discomfort
by AliceN (Sep 22)

Hi Justine,
Im similar to you and just over 3 years in from diagnosis. I’ve had fluctuations in fatigue and think this may be getting worse as I’m getting older, I’m almost 55 and

by Justine (Jun 22)

Hi, cheers, hope everyone is doing well. I'm a little over three years since diagnosis, have been doing fine on Imatinib 400 mg until the last month when I've had terrible fatigue and
Category: About CML

Replies: 1

Last updated: 22 September 2020
chris23 on 20 September 2020

Category: Getting help

Replies: 2

Last updated: 20 September 2020

Arthritis-like symptoms
by chris23 (Sep 20)

Thanks for your reply. I'm not certain it is TKI-related in my case because I had the issue before treatment, indeed I had it for about a year before diagnosis. At times, my knees are so

by alexmcpee (Sep 20)

Yeah this is on the top of the Symptoms for TKI not CML list I am afraid, joint, muscle and bone pain are very very common along with fatigue being another big one.
I get very achy joints at times

by chris23 (Sep 20)

Hey,
Does anyone else suffer from arthritis-like symptoms? I'm relatively fit and young, so I'm concerned I could be showing early signs of arthritis.
Assuming it's related to my CML, it
Category: Getting help

Replies: 2

Last updated: 20 September 2020
Sally-bear on 16 September 2020

Category: Side effects

Replies: 2

Last updated: 20 September 2020

Imatinib side-effect?
by Sally-bear (Sep 20)

Hi Philip...I'm glad to hear Omeprazole has helped your cough. It helped me a bit, but after 2 weeks taking 40mg per day,
GP says it should have helped to ease my chest by now.

by PhilipDavid (Sep 17)

Hi. I was diagnosed in February 2015 - started 400 mg imatinib in April 2015. I developed a horrible chronic cough - tried everything - now on Omeprazole which seem to have helped cough

by Sally-bear (Sep 16)

Hi everyone
I have been on Imatinib for 19 years now....am on 400mg per day. I have always suffered with congestion/cough
since taking it, but it has got worse and chest is painful. My GP is
Category: Side effects

Replies: 2

Last updated: 20 September 2020
Rashmi Agarwal on 18 September 2020

Category: Uncategorised

Replies: 3

Last updated: 19 September 2020

BCR levels 2yrs
by Rashmi Agarwal (Sep 19)

thanks alot for your reply, our doctor suggested to wait for 3 months and test again in 3 months .. not to panic and he had seen cases that goes up and down and then settle to a point.. so as for

by ColoradoGuy (Sep 18)

I will echo response in that it very well can be a lab error and if not then another TKI will most likely get you back to a deeper response. If a second test confirms it is not an error I

by alexmcpee (Sep 18)

Could be an error in reporting but if not at 0.1 your still very safe anything less than 1% is where you want to be. If not an error could be a domain mutation meaning that Imatinib no longer works

by Rashmi Agarwal (Sep 18)

my husband was diagnosed 2 years bk.

his bcr levels started at 47% 2 years bk

then on 1.5yrs testing it came to 0.001

but again today's report that is 2yrs is 0.1%
we are so
Category: Uncategorised

Replies: 3

Last updated: 19 September 2020
Craig747 on 15 September 2020

Category: Children & young people

Replies: 3

Last updated: 18 September 2020

Need some advice on platelets
by Craig747 (Sep 18)

I honestly have not heard of this. Can you send a link? And its ok to drink with Sprycel? Thanks

by Praveen (Sep 17)

Take papaya leafs juice twice a day. It will increase your platelets counts. You will see the difference in one week.

by snowman 35 (Sep 15)

My platelets were 140-150 then I started eating beetroots and went around 170+190...Now without eating constantly beetroots are I'm normal range(170-200)

by Craig747 (Sep 15)

Hello fellow CML warriors. I am now past month 3 and on 100mg Sprycel. At DX I was at 36% now I found out yesterday I am at 0.66. I am happy about that. My CBC looks good except my platelet is
Category: Children & young people

Replies: 3

Last updated: 18 September 2020
KingBurger on 24 July 2020

Category: Blood tests

Replies: 25

Last updated: 17 September 2020

New to CML
by Praveen (Sep 17)

Papaya leafs juice increases my platelets count from 1.13 to 1.28 in one week. It’s effective

by KingBurger (Sep 14)

Hi all,
Thanks again for all the comments. Just an update. My side effects have mostly dissipated at this point on Tasigna and I just got back my BCR/ABL for 1 month on the drug (if you recall I was

by philmc (Jul 27)

I'm on 100mg Dasatinib. I seem to be tolerating it right now, and as I say I don't know my latest BCR-ABL result yet, so I haven't fought to lower the dose or anything like that. After

by KingBurger (Jul 27)

Sounds like we are in a very similar boat. Will be curious to hear about your response to Dasatinib. What dose are you taking?
Spoke to my doc this morning and he wants to to take 3 days off of
Category: Blood tests

Replies: 25

Last updated: 17 September 2020
argearge on 17 September 2020

Category: About CML

Replies: 3

Last updated: 17 September 2020

No MMR after 24 months and in TFR
by argearge (Sep 17)

Thanks guys, maybe I just panicked.

by ColoradoGuy (Sep 17)

It took me 27 months to reach MMR and that was after switching TKI's 10 months before reaching MMR. I was concerned and then starting reading in many places that CCyR (<1.0) is a safe

by alexmcpee (Sep 17)

Each persons case is unique and not everyone will get TFR but with that being said I think it can take a very long time to be at lower levels maybe a decade or 2 and to say that it’s not

by argearge (Sep 17)

I was wondering. Literature states that there is a minimal chance on TFR when there is no MMR after 24 months. Can someone confirm this?
Category: About CML

Replies: 3

Last updated: 17 September 2020