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stefanolucas on 13 February 2020

Category: Treating CML

Replies: 2

Last updated: 13 February 2020

Question , please advice
by stefanolucas (Feb 13)

Yes , at the beginning she had began her treatment with Imatinib but she lowed to 20% not in a fast way how it shoulded be doc says , after she reached 20% from this point Imatinib didn’

by ColoradoGuy (Feb 13)

A little background regarding the resistance to Imatinib would be helpful. Did her numbers climb in two consecutive tests significantly? Was mutation testing performed?
I think that the

by stefanolucas (Feb 13)

Hello ,
As a background story which are in my other threads , about my sister ( 21yrs) who was diagnosed in June,2018 with CML and had a resistance to imatinib after we switched to
Category: Treating CML

Replies: 2

Last updated: 13 February 2020
Rayjee33 on 5 February 2020

Category: Uncategorised

Replies: 8

Last updated: 12 February 2020

Treatment in
by Nimbus2 (Feb 12)

By coincidence, I am presently reading Cancer Ward by Aleksandr Solzhenitsyn. That book examines cancer treatment in the USSR in 1955.

by Rayjee33 (Feb 12)

The only way I could do that was if you had to do a lot more work and then you would be done by yourself so you would just do

by sandy craine (Feb 10)

Hi and welcome,
It might be more helpful for you to contact one or both of the following patient organisations based in Russia. I hope they can give you some advice.
The national association of

by Nimbus2 (Feb 9)

Yes, there is one awkward mutation that would probably require the use of ponatinib. The mutation name, which is a set of numbers and letters, may not automatically translate into Russian. From your
Category: Uncategorised

Replies: 8

Last updated: 12 February 2020
Justina on 8 February 2020

Category: Side effects

Replies: 4

Last updated: 10 February 2020

Side effects
by sandy craine (Feb 10)

Hi,
First, congratulations on such a low PCR result. From what I have read, imatinib induced amenorrhea (absence of menstruation) may be a side effect of therapy, but is certainly not a common one,

by kat73 (Feb 10)

How old are y'all? It's very common to have these changes in the decade before menopause. They even have a name for it: perimenopause. The 40's are not kind to women.

by Tater1 (Feb 8)

Hi
I am on 50 mg dasatinib and have seen huge changes in my period, but in my case more frequent and heavier as a result of the medication. From what I’ve read, it’s not

by VickyK. (Feb 8)

Hi Justina,

I had many abnormalities in my period cycle six months after being on TKI treatment, the only difference is that I am on nilotinib.Things now are much better but not perfect as
Category: Side effects

Replies: 4

Last updated: 10 February 2020
johnw1001 on 10 February 2020

Category: Treating CML

Replies: 0

Last updated: 10 February 2020

What happened to Bafetinib?
by johnw1001 (Feb 10)

Bafetinib (N-187) which is an inhibitor of BCr-Abl was developed as an experimental drug in Japan and then licensed for development by Cayman Chemical in USA after being given orphan drug status in
Category: Treating CML

Replies: 0

Last updated: 10 February 2020
Karthikeyan on 10 February 2020

Category: Uncategorised

Replies: 1

Last updated: 10 February 2020

Need suggestions from scuba and others.Wrongly switched from glivec to nilotinib.can i come back to glivec
by scuba (Feb 10)

Your PCR results are excellent. The FISH results make no sense and are likely erroneous. It's not possible for your PCR to be near "undetectable" and FISH be 50%. Ask your doctor to

by Karthikeyan (Feb 10)

Hello scuba and everyone. i'm Karthikeyan.

Diagnosed cml in January 2015.this forum is really helpful to newcomers.thanks for the service.i was taking imatinib 400 mg until unusual fish test
Category: Uncategorised

Replies: 1

Last updated: 10 February 2020
saifur360 on 2 February 2020

Category: Side effects

Replies: 2

Last updated: 9 February 2020

Eyes fold, burning
by johnw1001 (Feb 9)

Imatinib can cause sensitivity around the eyelids and a swelling of the tissues in that area-a condition called blepharitis.I use Blephasol which is basically a saline solution and wipe the eyelids

by David Fitz (Feb 2)

Imatinib can cause dry eyes. I don’t take imatinib, but have had dry eyes in the past and found carmellose sodium drops very effective for lubrication.
David.

by saifur360 (Feb 2)

I am on imatinib (Veenat 400 mg) 4 years.
Now my RQ-PCR is 0.015
ESR 84
Hemoglobin 11.2
Last 1 year my both eyes are burning, drop Water, and when I looking angle my eyes white
Category: Side effects

Replies: 2

Last updated: 9 February 2020
scuba on 2 February 2020

Category: Uncategorised

Replies: 2

Last updated: 8 February 2020

Coronavirus and you
by Sunny (Feb 8)

Useful information as usual, Scuba, and putting things in perspective.
Thank you,
pigeon.

by Taluta (Feb 6)

Thank you for sharing
knowing too well our immune system needs a boost!!!

by scuba (Feb 2)

We are reading a lot lately on the rapid spread of Coronavirus. Much of what is out there is scaring people unnecessarily.
Coronavirus is less deadly than the flu - keep that in mind. Flu spreads
Category: Uncategorised

Replies: 2

Last updated: 8 February 2020
PhilB on 7 February 2020

Category: Uncategorised

Replies: 3

Last updated: 8 February 2020

Long time no post
by Chrishertz (Feb 8)

Congratulations

by PhilB (Feb 7)

I do indeed remember the rollercoaster. The old LLS site played such a big role in getting me through it and I enjoyed my years helping others with their journeys. It was a wrench to

by scuba (Feb 7)

Philb - A blast from the past! Great to hear from you. We pretty much started on this road together. I try to stay involved mostly for new comers. We all remember the emotional roller coaster in the

by PhilB (Feb 7)

I've been off the boards for some years getting on with life. Hi to Sandy and to Scuba and anyone else from the old LLS boards who sought sanctuary over here. I hope life is treating
Category: Uncategorised

Replies: 3

Last updated: 8 February 2020
koralia.pappi on 6 February 2020

Category: Blood tests

Replies: 3

Last updated: 7 February 2020

hsCRP levels
by David Fitz (Feb 7)

Well I imagine flu could certainly increase CRP - stands to reason I guess but I’m no expert. Keep an eye on it, and if your doctor isn’t fussed about it make sure you get a really good

by koralia.pappi (Feb 7)

Hi David,
My doctor disregards this as a non-issue. Specifically for the last reading, I think it is also kind of expected, because all readings are a bit high due to the flu (WBC 10.4, ESR: 21,

by David Fitz (Feb 7)

CRP - I only remember that one because it was a topic of constant conversation with doctors when my twins lived in the hospital. It’s a marker for inflammation if I remember rightly and I

by koralia.pappi (Feb 6)

Hi all,
Question on hsCRP:
My levels have been around 0.8-0.9 mg/dl for the last 3 lab tests (Sept, Nov, Feb), with a normal value of <0.3mg/dl according to my lab.

So what's with this
Category: Blood tests

Replies: 3

Last updated: 7 February 2020
Taluta on 29 January 2020

Category: Uncategorised

Replies: 4

Last updated: 6 February 2020

Just joined
by Taluta (Feb 6)

Hi,,since 2018 but still taking taking gleevec
1 tablet 400g every night,,,in 2010 I started with 800g
and as years and progress came by slowly started dropping to
600g

by Taluta (Feb 6)

Yes !!! There is hope ,,,Iam planing a big one for my 40th God willing!!!!

by alexmcpee (Jan 29)

Amazing!! People like you give us “newbies” (nearly 2 for me) a lot of hope! Go and celebrate! I would!
Alex

by scuba (Jan 29)

Congratulations! How long have you been "undetected"?
Category: Uncategorised

Replies: 4

Last updated: 6 February 2020
nicolaclubb on 3 February 2020

Category: Side effects

Replies: 1

Last updated: 4 February 2020

Enlarged Liver
by sandy craine (Feb 4)

Hi,
I have done a quick search and understand that average liver sizes are as follows:
6.4 cm for 1 to 3 months
7.6 cm for 4 to 9 months
8.5 cm for 1 to 5 years
10.5 cm for 5 to

by nicolaclubb (Feb 3)

Hi.
Was wondering if anyone has experienced Liver enlargement since starting medication. Just had scan my liver is over double it’s normal size. It’s 17.5cm and should be 7.5
Category: Side effects

Replies: 1

Last updated: 4 February 2020
Sandrahervieux on 3 February 2020

Category: Other conditions

Replies: 5

Last updated: 3 February 2020

New to this
by sandy craine (Feb 3)

Hi Sandra and welcome,
Given your comment about your appointment being rushed you were not given much information about either CML? or treatment options? firstly I would just like to reassure you

by Sandrahervieux (Feb 3)

Oh wow David. Thank you for all the links! I will definitely have a look!!

by Sandrahervieux (Feb 3)

Thank you Scuba. I like how you’ve reframed this into steps. It appears a little less overwhelming. Hopefully things remain as smooth as possible. Thanks again.

by David Fitz (Feb 3)

Scuba already said this, but take your imatinib with whatever if usually your biggest meal of the day. It really makes a big difference.
We have a booklet here, which you might find helpful. Don
Category: Other conditions

Replies: 5

Last updated: 3 February 2020
koralia.pappi on 23 January 2020

Category: Organising your life

Replies: 11

Last updated: 1 February 2020

We will still get the common cold!
by scuba (Feb 1)

I have to "take" more vitamin D3 in order to get it into the low 70's (ng/ml) because I also take vitamin K2 (and eat Natto, which is high in K2). Vitamin K2 "uses" D3 in

by cmljax (Jan 31)

Your doctor is right to want to monitor it, because as Scuba says, we are not all the same. My D3 level was at 25 when I was diagnosed, not critically low, but certainly not high enough. I

by cmljax (Jan 31)

Your doctor is right to want to monitor it, because as Scuba says, we are not all the same. My D3 level was at 25 when I was diagnosed, not critically low, but certainly not high enough. I

by koralia.pappi (Jan 29)

I also don't need subscription for D3, but my doctor wants to monitor it (actually, two doctors, haematologist and endocrinologist), and not increase the dosage too much, in case it goes through
Category: Organising your life

Replies: 11

Last updated: 1 February 2020
snowman 35 on 29 January 2020

Category: Drug-food interactions

Replies: 4

Last updated: 30 January 2020

Stress about what can I eat
by snowman 35 (Jan 30)

Loool Scuba! I know your story and your diet !I have read your posts!! Sometimes my fear is bigger than common sence... Thank you very match for your response! You both helped very match!!

by scuba (Jan 30)

Oops ... I have been eating grapefruit. I guess I didn't get the notice.
Seriously - the interaction between enzymes in grapefruit (and Seville oranges) is less of an issue with dasatinib (

by snowman 35 (Jan 30)

Thank you David for your response! I know that I am worried too match but sometimes is out of my controle... I am so close to try TFR and I do not won't to lose that... Thank you again!

by David Fitz (Jan 30)

You are getting far too worried. Yes, avoid grapefruit. But it's not as if eating a grapefruit flavoured piece of candy is going to cause a problem. If you accidentally eat a bite of it in a
Category: Drug-food interactions

Replies: 4

Last updated: 30 January 2020
picks54 on 28 January 2020

Category: Uncategorised

Replies: 11

Last updated: 30 January 2020

Picks
by David Fitz (Jan 30)

There is definitely a difference, and the treatment for each disease is not the same. The "watch and wait" approach is a totally valid one for CMML, so your doctor has not done anything

by picks54 (Jan 29)

My wife just informed me that I have CMML not CML. CMML stands for Chronic myelomonocytic leukemia. I'm not sure if there is a difference between the two. This type of leukemia

by picks54 (Jan 29)

Thank you for that I will contact him.

by RC Kirk (Jan 29)

Howdy Picks,
Welcome to CML Support! The only reason I can think of why you may not have started a TKI is if you have atypical CML. If you've been diagnosed with Ph+ Chronic
Category: Uncategorised

Replies: 11

Last updated: 30 January 2020
kathy on 9 May 2010

Category: Uncategorised

Replies: 19

Last updated: 27 January 2020

fatigue
by David Fitz (Jan 27)

Oops, yes! Post edited to say 100mg not 10mg!
20mg is the lowest dose of dasatinib. It’s a tiny pill, so cutting it in half would be a challenge!
David.

by Nimbus2 (Jan 27)

David. I wonder whether you started on 100mg.

by David Fitz (Jan 25)

Hi Tedro,
When you say your numbers are “great”, what are they exactly? I felt a shitload better when I lowered my dose from 100mg of dasatinib (Sprycel). If your response has been good

by Tedro (Jan 25)

I’ve been on Sprycel for almost 2 years 100 mg once a day. I constantly feel tired and fatigue never feel like doing anything and it’s very difficult to get out of bed especially because
Category: Uncategorised

Replies: 19

Last updated: 27 January 2020
Nimbus2 on 26 January 2020

Category: Uncategorised

Replies: 5

Last updated: 27 January 2020

Dastatinib after imatinib resistance
by kat73 (Jan 27)

Glad you feel better on dasatinib. I'll add to my anecdotal observance that people who feel dreadful on imatinib often feel much better on dasatinib. Feeling (and looking!) horrible

by Nimbus2 (Jan 26)

Thank you, David, for your extra reassurance. I have seen data representing the cohort that has achieved the complete cytogenetic response but not the major molecular response. However, I am

by David Fitz (Jan 26)

This is a completely data-less consideration, but I wonder if those who had a resistance to dasatinib as well as imatinib did so at a higher PCR than yours - which of course is within touching

by Nimbus2 (Jan 26)

Thank you, kat 73, for your reassurance. I was becoming somewhat disheartened following my Googling and search for relevant statistics. I did momentarily reach 0.15% (just short of MMR) but then I
Category: Uncategorised

Replies: 5

Last updated: 27 January 2020
vivbow on 17 January 2020

Category: Uncategorised

Replies: 4

Last updated: 25 January 2020

hand cramps
by vivbow (Jan 25)

I've never tried Rolaids but will keep in mind. I hate the idea of taking more pills or supplements, etc. I do use Theraworx for nighttime leg cramps. It is a magnesium foam

by mamodei (Jan 25)

I got hand cramps and leg cramps early on when I first started Tasigna. The hand cramps would fold my fingers over and leave my hand useless, the leg cramps required me to get up at night and

by vivbow (Jan 17)

thank you. I should have said I have been on gleevec for many years now and somehow this seems worse than ever before.
I often get them when I'm working in the kitchen cutting and chopping

by shayner (Jan 17)

Hi I get them quite a lot, they are really awkward and painful aren’t they? Sometimes it’s so severe it causes my thumb to touch my wrist! I find the answer is hydration, try not to get
Category: Uncategorised

Replies: 4

Last updated: 25 January 2020
Tater1 on 9 January 2020

Category: Uncategorised

Replies: 7

Last updated: 23 January 2020

Every Other Day Dosing vs Daily Sprycel
by Tater1 (Jan 23)

Thanks. I need to be reminded to be patient, so this was just the advice I needed. I have a hard time being on drug holiday. I’m anxious to be on treatment and stay on to get rid

by scuba (Jan 23)

Interesting ... I did have myelosuppression on 20 mg, but not for long. It took a couple of cycles and I adapted. I continue to this day to have myelosuppression, but mild. My neutrophils and

by Tater1 (Jan 23)

Doctor lowered my dose to 50mg, and it only took 4 days for WBC to hit 1.7, ANC down to .7 from 1.4. The good news is that platelets are at 257 (from 50) so looks like platelets went up

by scuba (Jan 9)

Tell your doctor that Dr. Jorge Cortes, one of the top 4 or 5 specialists in CML research and now is the director of the Georgia cancer center (U.S.) is the one who prescribed 20 mg to me and told
Category: Uncategorised

Replies: 7

Last updated: 23 January 2020
mamodei on 17 December 2019

Category: Getting help

Replies: 20

Last updated: 22 January 2020

Finding a new hematologist/oncologist
by cmljax (Jan 22)

Sounds like real progress with your doc. Good for you for persisting. That's what I had to do with my doc and it finally worked. Here's hoping that you can get to 20 mg

by mamodei (Jan 21)

Update on this. I had another appointment last week. I decided to go off the Sprycel 2 days before the appointment so that I could communicate better. I often have trouble speaking

by RC Kirk (Dec 30)

One other option would be to try imatinib. I didn't experience any thoracic side effects like I do on dasatinib. You might not need the recommended starting dose of 400mg/day since your

by mamodei (Dec 30)

He has also been clear he does not consider any of these side effects from the CML. So that just leaves coincidence and psychosomatic. This all leaves me feeling unsafe whenever I have
Category: Getting help

Replies: 20

Last updated: 22 January 2020