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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
vmsantoso on 13 January 2020

Category: About CML

Replies: 5

Last updated: 16 January 2020

Recently diagnosed
by vmsantoso (Jan 16)

Hi Alastair and Kirk,
big thanks to your explanation! It really helps a lot.
No, he didn’t get any allopurinol right now. He got it when taking hydroxyurea, and he really felt the gout in his

by AlastairC (Jan 16)

Hi Vania,
When he starts imatinib, his body will still be fighting the CML, but also getting used to the imatinib and side effects. Like Kirk I was diagnosed by chance before it had really

by RC Kirk (Jan 16)

Hi Vania,
My first thought when I read about his upper stomach fullness was that he may have an enlarged spleen due to the CML. It should probably get better as his blood returns to a more

by vmsantoso (Jan 16)

Hi Kirk,
he’s been taking Gleevec 3 days now, and got a bit fullness in his upper stomach (perhaps it is the side effect ?)
And i saw some progression in his body, like face became a bit red (
Category: About CML

Replies: 5

Last updated: 16 January 2020
Sd on 16 January 2020

Category: Side effects

Replies: 0

Last updated: 16 January 2020

mouth issues
by Sd (Jan 16)

Besides dry mouth, is anyone trying to manage issues with the oral mucosa? Not sores or ulcers, but rough feelings in the sides of the cheeks (as when tasting something bitter). Also some tenderness
Category: Side effects

Replies: 0

Last updated: 16 January 2020
LabNoir on 14 January 2019

Category: Uncategorised

Replies: 12

Last updated: 13 January 2020

T315i mutations and BCAA
by scuba (Jan 13)

You want your vitamin D level to be lower than 100 /ng/ml with 50 - 70 ng/ml ideal for cancer fighting and disease 'minimization' in general. Dorup's work in 2012 documents a "J -

by LabNoir (Jan 13)

X

by LabNoir (Jan 13)

Hi Scuba

1) I think cancer patients need to be on a customized vegan diet. Some things are off-limits. Tofu, beans and nuts contains a lot of BCAA and methionine ( another no-no). Even more

by scuba (Jan 12)

There is much evidence that a 'veggie' diet is anti-cancer:
https://www.huffpost.com/entry/vegan-diet-cancer_b_2250052
A low protein diet forces the body to "autophage" and digest
Category: Uncategorised

Replies: 12

Last updated: 13 January 2020
Karin on 12 January 2020

Category: Side effects

Replies: 2

Last updated: 13 January 2020

Coughing
by Nimbus2 (Jan 13)

Are you taking any other medicines that could cause a cough? I only mention this because I had the same issue and Ramipril proved to be the cause.

by David Fitz (Jan 12)

Have you tried using a humidifier in your bedroom? My children often have a cough, and it really helps them.
You need one suitable for the size of your bedroom. Tiny ones won’t really

by Karin (Jan 12)

I was diagnosed with CML one year ago. (69 yr old female) Have been taking 400mg of imatinib mesylate daily. Side effects have not been too bad and some are easing up. I have developed a chronic
Category: Side effects

Replies: 2

Last updated: 13 January 2020
labros on 11 January 2020

Category: Side effects

Replies: 3

Last updated: 12 January 2020

Transient drop of platelets due to Dasatinib
by Brett0503 (Jan 12)

I has posted the same in the other thread. Not taking the pill before the blood draw made the difference.
https://cmlsupport.org.uk/post/58732

by labros (Jan 12)

Hello Rosiem,
How low are your PLTs in general? What made me try this "experiment" was the fact that some days the PLTs were low (below 75, BUT still above 50) and some others normal (

by Rosiem (Jan 12)

I'm really excited about your post. I am currently on 70 mg Dasatinib and suffer from Myelosuppression and low platelets side effect.
I have an appointment with my consultant this Tuesday

by labros (Jan 11)

I would like to draw your attention to an "unreported" side effect of dasatinib that might affect someone's treatment plan and lead to discontinuation of Dasatinib due to
Category: Side effects

Replies: 3

Last updated: 12 January 2020
cdw5000 on 9 January 2020

Category: About CML

Replies: 11

Last updated: 12 January 2020

Congratulations Chris Harrop
by Nimbus2 (Jan 12)

Hello LabNoir. I could not find the data. The nearest I can get is at the following site:
https://www.hematology.org/Thehematologist/Diffusion/6534.aspx

These data are provided for those age

by LabNoir (Jan 12)

Hi Nimbus
Thank you. I would like to know the relative survival numbers you would have based on stratificaiton of treatment milestone . My understanding is that CMR (old categorization) in the first

by David Fitz (Jan 11)

Cancer Research’s figures for 5 year survival are based on a paper named “National Cancer Intelligence Network. Trends in incidence and outcome for haematological cancer in England: 2001

by Nimbus2 (Jan 11)

I did write to Cancer Research UK concerning the apparent disparity between USA data and UK data. I received eventually a very defensive response. It appears at first glance that the NHS five year
Category: About CML

Replies: 11

Last updated: 12 January 2020
Sonia0609 on 6 January 2020

Category: Treating CML

Replies: 9

Last updated: 9 January 2020

Curcumin
by scuba (Jan 9)

I take 5,000 IU's vitamin D3 one day; 10,000 IU's the next day in winter.
In spring I switch over to just 5,000 IU's every day until fall.
The above is calibrated by vitamin D tests

by JPD (Jan 9)

I know you've answered this before - but what levels of curicumin (and D3 for that matter) are you currently taking? @scuba

by alexmcpee (Jan 7)

Thank you Scuba!
I bought some Curcumin with pepper from Amazon and it has a heart warning on the label and because Tasigna also has a heart warning I was reluctant to take it just in case it caused

by scuba (Jan 7)

I continue to take C3 complex version of Curcumin.
Category: Treating CML

Replies: 9

Last updated: 9 January 2020
Ontasigna on 8 January 2020

Category: Treating CML

Replies: 3

Last updated: 9 January 2020

Nilotnib : Dose reduction
by Ontasigna (Jan 9)

Thanks David. Last 9 months I am in mr4

by VioS (Jan 8)

Helo,
after 1 year and 10 months of tasigna (on 12 december) because of side effects like constipation, prostatitis and tinitus, i reduce my dose to in half, and after a week i stayed 3 days free of

by David Fitz (Jan 8)

Hi,
I wouldn't be concerned about slightly raised levels of white cells. Our bodies produce more of these when we need to fight infections, and around this time of year (in the northern

by Ontasigna (Jan 8)

Hi all,
It's been an year I started off with Nilotnib 400mg BD. My PCr as of 26th Dec 19 - 0.00555
I have appointment with my Doc tom. Can I ask for dose reduction?
My lmyphocytes and esinophils are
Category: Treating CML

Replies: 3

Last updated: 9 January 2020