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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
Tanya Cuffe on 21 January 2020

Category: Uncategorised

Replies: 4

Last updated: 21 January 2020

Quick question friends,re Sprycel reduction
by Tanya Cuffe (Jan 21)

Thanks David,am going to try that then,splitting the pills.Am so glad I asked!This is a great site!

by David Fitz (Jan 21)

The 50s are totally splittable - they’re a nice oval shape so with a pill cutter dead easy to splice I reckon. I agree with Scuba that 20mg every day would be preferable to 50 every other day

by Tanya Cuffe (Jan 21)

Thanks heaps for that Scuba.She won’t prescribe me 20 mg tabs so may try splitting 50mg ones.You are so knowledgeable in these matters and am grateful:)

by scuba (Jan 21)

You can certainly try 50 mg every other day as a way to lessen side effects, but 50 mg every 2nd day is not the same as 25 mg every day. It doesn't work that way. Sprycel metabolizes very
Category: Uncategorised

Replies: 4

Last updated: 21 January 2020
shelly on 1 January 2020

Category: Drug-food interactions

Replies: 16

Last updated: 21 January 2020

140mg Sprycel Dastinitab
by David Fitz (Jan 21)

0.01-ish% is basically MR4, so it would be highly unlikely you haven’t achieved CCyR which is usually associated with a PCR of about 1%, give or take.
David.

by DanielSingapore (Jan 21)

My latest reading today is 0.013% for my bcr-abl. Will perform my CCyR test in March. This has been my 4 months plus journey with Dasatinib.

by DanielSingapore (Jan 18)

Thanks and Appreciate much for your answer and will definitely be looking at my management for side effects and QOL issues. Will discuss with my hematologist on my dosage and also check my

by scuba (Jan 16)

I understand you want to know what is the survival rate of patients with <sic> accelerate phase CML. A way to think of this is what is the survival rate of accelerated phase patients - once -
Category: Drug-food interactions

Replies: 16

Last updated: 21 January 2020
gof on 21 January 2020

Category: Uncategorised

Replies: 0

Last updated: 21 January 2020

PCR 0% but also questions
by gof (Jan 21)

Hi,
I want to provide an update. One year after the diagnosis (DX@Nov 2018), we received in December results of PCR (sample was taken at the end of September). Result is 0% (lab has log 4.5
Category: Uncategorised

Replies: 0

Last updated: 21 January 2020
Eck on 20 January 2020

Category: Uncategorised

Replies: 5

Last updated: 21 January 2020

Recurring symptoms
by Eck (Jan 21)

Thanks Alex that is good to hear but I have to go through this slow process, no way I will get to speak to the consultant.

by alexmcpee (Jan 20)

Ahh ok all of those symptoms you mention are all part of the long list of the medication symptoms rather than CML. I had some diagnosis symptoms reappear months ago and was down to my meds. It

by Eck (Jan 20)

I spoke to McMillan rep and you do indeed need a GP referral if you need an extra appointment.

by Eck (Jan 20)

Night sweats, nausea, short of breath, painful urination, tiredness.
It is easier to see the Queen than the consultant I have never had a number for her.
The nurse never got back to me, i've got
Category: Uncategorised

Replies: 5

Last updated: 21 January 2020
Lilahmae98 on 19 January 2020

Category: Drug-food interactions

Replies: 1

Last updated: 21 January 2020

Fluid retention- sprycel
by David Fitz (Jan 21)

I am not sure about dasatinib, but imatinib takes about 5-7 days to almost fully wash out of your system.
But dasatinib has a shorter half-life of about 3-5 hours and I have read that the wash

by Lilahmae98 (Jan 19)

My boyfriend has been on sprycel for a year but now has had severe swelling in his man area as well as tongue. Per ER he was to stop his med and see doctor this week, he has not taken the med since
Category: Drug-food interactions

Replies: 1

Last updated: 21 January 2020
Damian Gabilondo on 20 January 2020

Category: Uncategorised

Replies: 2

Last updated: 20 January 2020

Tasigna and Alcohol
by Damian Gabilondo (Jan 20)

Gracias por la respuesta, mi último ALT (diciembre de 2019) es 34 , al igual que una persona sin medicamentos. Leí en alguna parte que hay una cierta iteración con la medicación, mi temor es

by scuba (Jan 20)

Beber alcohol no es un problema con los medicamentos actuales para la CML, incluida Tasigna (TKI). Yo personalmente bebo vino todos los días y no valdría la pena vivir sin un whisky y un cigarro.

by Damian Gabilondo (Jan 20)

Hola colegas, necesito el consejo de especialistas, especialmente aquellos que beben alcohol, no puedo encontrar literatura sobre Tasigna y alcohol, mi médico me dijo que puedo tomar moderadamente y
Category: Uncategorised

Replies: 2

Last updated: 20 January 2020
Lucky Utubor on 18 January 2020

Category: Uncategorised

Replies: 2

Last updated: 19 January 2020

Increasing platelets and BCR ABL
by Lucky Utubor (Jan 19)

Hi Sandy,
Thanks for your support. When I was in remission my BCR was 0.0001 and it was stable for 2 yrs and the it increased a little to 0.008 but later went back to 0.0001 it was there until 2018

by sandy craine (Jan 18)

Hi Lucky,
An increase in platelets plus a rise in BCR/Abl level (what is the latest value?) may mean that you need to change to a different TKI - depending on your next PCR result. I assume your

by Lucky Utubor (Jan 18)

My brc abl and platelets are increasing. I have been on remission for over 3 yrs but now am shocked to see my platelets increasing from 125,000-588,000 and my BCR increasing as well. My worry is is
Category: Uncategorised

Replies: 2

Last updated: 19 January 2020
Sherley on 17 January 2020

Category: Uncategorised

Replies: 4

Last updated: 18 January 2020

Painful toes while on sprycel
by Sherley (Jan 18)

Hi
im sorry to her about you as well I close to my ccyr. I have an appt Tuesday to get my next reading on my bcr year. I’m 15 months into treAtment now.

by Sherley (Jan 18)

Hi Sandy,

thank you you so much for getting back to me. Someone else told me it may be that too but didn’t give me any suggestions. I’m going to look up that now and

by sandy craine (Jan 18)

Hi Sherley,
This may be due to an acquired condition caller Peripheral Neuropathy. Here is a link to some podcasts- 1st explains what PN is with the others outlining how you might tackle this

by ColoradoGuy (Jan 17)

Sherley - Very sorry to hear about this painful side effect. I experienced pain in my tailbone very early into treatment. Usually pain is in the early weeks. I like to think that
Category: Uncategorised

Replies: 4

Last updated: 18 January 2020
shayner on 15 January 2020

Category: Uncategorised

Replies: 2

Last updated: 18 January 2020

Generics
by shayner (Jan 18)

Thanks Sandy, I had already decided to ask not to have it again, I’ve got phone consultation next week so I’ll speak to my haemo nurse then and see if they can swap them out straight

by sandy craine (Jan 18)

Hi Shayner,
Given what you say about the generic you have been prescribed, I would recommend you talk to your doctor about trying a different brand of generic if possible. There are many available.

by shayner (Jan 15)

Hi I’ve just started a new generic imatinib by Dr Reddys, it’s the first time I’ve received these. I was wondering if anyone else on here has had them and whether they’ve
Category: Uncategorised

Replies: 2

Last updated: 18 January 2020