You are here

Forum

David Fitz on 9 December 2020

Category: Uncategorised

Replies: 19

Last updated: 7 April 2021

Meeting with Pfizer regarding the BioNTech / Pfizer COVID vaccine
by teddyb (Apr 7)

Thanks for the reply.
I had my shot today, took my Sprycel a few hours after the Pfizer vaccine, so far so good

by Felix (Apr 6)

Hi Teddy, I had the Pfizer Vaccine and my TKI with no problems and absolutely no side effects at all ,so don't think about it just do it .Denise.

by teddyb (Apr 6)

Hello Sandy.
I am just thinking of taking the vaccine and TKI together might be a bit hard on the body. (In regards to side effects etc)
Maybe i am completely wrong thinking this, but would be

by sandy craine (Apr 3)

Hi Teddy,
Why do you think it would be preferable to skip your TKI on the day you have the vaccine?
Sandy
Category: Uncategorised

Replies: 19

Last updated: 7 April 2021
Alaina on 6 April 2021

Category: Uncategorised

Replies: 0

Last updated: 6 April 2021

Miristen
by Alaina (Apr 6)

Does anyone have updates on the Miristen studies? I tried searching and didn't find anything recent.
Category: Uncategorised

Replies: 0

Last updated: 6 April 2021
philmc on 27 February 2021

Category: Uncategorised

Replies: 9

Last updated: 6 April 2021

First BCR/ABL uptick
by ColoradoGuy (Apr 6)

It seems like a smart switch because Nilotinib approaches the disease very similar to Imatinib. I would not be surprised to see it come down. My doctor did switch me when I went above 1.

by philmc (Mar 26)

I'm not sure how it works here and whether the labs have access to that info. I'm not sure why it takes so long though (something fundamental about how PCR tests work that I don't

by gbatalha (Mar 24)

Labs should implement a simple rule ... if it's going up instead of down retest using the same batch. I would gladly pay for them to do it!
From the patient’ mental standpoint it

by An (Mar 24)

Upticks are anxiety inducers...happy for you...onward and downward :)
Category: Uncategorised

Replies: 9

Last updated: 6 April 2021
bendicco on 30 March 2021

Category: Uncategorised

Replies: 3

Last updated: 5 April 2021

So confused!
by bendicco (Apr 5)

Thank you everyone!

by sandy craine (Apr 3)

Take a look at the link below from another post that you may have missed (by Scuba) which seems to indicate the TKI therapy may reduce the risk of serious outcomes from a Covid infection.
cml-

by ColoradoGuy (Apr 2)

I had it in November and it was like a cold that would not totally go away for like 10-12 days. That being said, I am 40 so not in the at risk age group. It is real so stay safe but IMHO

by bendicco (Mar 30)

I have CML diagnosed 3 years ago. In my mid 60’s. On Gleevec numbers not detectable. My 79 year old partner and myself have received both our Covid vaccines about a month ago.
my
Category: Uncategorised

Replies: 3

Last updated: 5 April 2021
kathvaliao on 26 February 2021

Category: Children & young people

Replies: 8

Last updated: 30 March 2021

Pregnant and Suspected to have CML
by daniellaw (Mar 30)

Hi Kathleen
Sorry to hear about all the worries you are having at the moment. I completely understand as I was diagnosed with CML when I was 14 weeks pregnant with my second son. That was almost 19

by MartinZA (Feb 26)

Hi Kathleen
It is treated, for most of us, through oral medications that are taken once or twice a day. The medications have a very high success rate and, even though they can't cure the disease,

by kathvaliao (Feb 26)

Thank you so much, Sandy!
That’s good news to me. I get worried lately most especially for my baby not just for me. I feel guilty that I might give him a condition because I’m not

by kathvaliao (Feb 26)

Thank you so much, Martin!
Your words encourages me. I most of the time overthink about my condition. Hearing from you makes me less worried.
I actually don’t feel any symptoms right now. I
Category: Children & young people

Replies: 8

Last updated: 30 March 2021
Tanya Cuffe on 26 March 2021

Category: Uncategorised

Replies: 2

Last updated: 26 March 2021

Was non detectable now am not...
by Tanya Cuffe (Mar 26)

Thank you Scuba.You have given me peace of mind and I think you’re awesome:)

by scuba (Mar 26)

Any PCR measure below 0.01% is indistinguishable from "undetected" in terms of PCR precision and accuracy. Your result is in the noise of the test.
Stay your course and at next test

by Tanya Cuffe (Mar 26)

Hi friends, I was non detectable for 18 months on 20 mg Sprycel,last bloods I am >0.003. Is this a cause for concern? Should I raise my dosage? I have no idea what to do as my Haemotologist
Category: Uncategorised

Replies: 2

Last updated: 26 March 2021
scuba on 26 March 2021

Category: Uncategorised

Replies: 0

Last updated: 26 March 2021

CML - Covid - TKI's may offer protection
by scuba (Mar 26)

Many on our forum are concerned having CML exposes you to a higher Covid risk.
Evidence is emerging the opposite may, in fact, be true:
Case Study Shows Potential Protective Effect of TKI Therapy
Category: Uncategorised

Replies: 0

Last updated: 26 March 2021
Janet Treble on 22 March 2021

Category: Side effects

Replies: 10

Last updated: 26 March 2021

Advice needed please!
by Zaccar (Mar 26)

Hi!
They have no justifiable reason to start you on that strong a dosage. Nilotinib 800mg is very high, even if you have a high sokal score. Ask them to lower the dosage.

Good

by Mick E (Mar 26)

Hello Janet
Sorry to hear you’ve had so many problems with the meds so far! I went through similar problems and changes of meds until I was settled on Nilonotib. Initially I

by David787 (Mar 25)

Fingers crossed for the clinic Janet.
David

by Janet Treble (Mar 25)

Thanks for your reply, it really sounds like you had an horrendous time! Im back at clinic this afternoon to see what they say, staying positive for a more productive outcome!
Category: Side effects

Replies: 10

Last updated: 26 March 2021
steven7 on 6 March 2021

Category: Side effects

Replies: 9

Last updated: 26 March 2021

dasatinib side effect
by steven7 (Mar 26)

Can you share what PCR level did you reach so that your doctor allow lowering the dosage?

by mamodei (Mar 25)

You can cut the 100 mg pills with a pill cutter to get 50. My doctor had me do that until the 50s arrived.

by steven7 (Mar 25)

Thank you Shawn. Can you please share the research of lower dosage reaching same efficacy?

by ShawnJ (Mar 25)

Steven,
I too have had similar side effects to yours on Sprycel. I have been taking it a little over a year. I have heart palpitations controlled by beta blocker and blood pressure controlled by
Category: Side effects

Replies: 9

Last updated: 26 March 2021
Vikram varma on 17 October 2020

Category: Getting help

Replies: 11

Last updated: 24 March 2021

About marriage
by sandy craine (Mar 24)

Please us the direct message to contact individuals members of this forum. If you click on the envelope on the header bar you can send a message to individual members.
thanks for your understanding

by Beulaparthiban (Mar 23)

We are seeking a groom for our sister who is on Imatinib medication. If you are interested call this number deleted by moderator

If you wish to contact an individual please use a direct message -

by Beulaparthiban (Mar 23)

Can you please share your matrimony profile ?

.we are interested to know about you

by Beulaparthiban (Mar 23)

Hello
Category: Getting help

Replies: 11

Last updated: 24 March 2021
Kathyp on 21 March 2021

Category: Uncategorised

Replies: 7

Last updated: 23 March 2021

Tki and Tendinitis
by Buzzm1 (Mar 23)

Kathy, for your own health you should at least reduce your Glivec dosage to as low as possible as soon as possible. In the early years of Glivec it was customary to start CML patients on 600mg

by Kathyp (Mar 23)

Thank you for your reply , I was on 600 mg for along time then reduced to 400mg , I have every faith in my Haematologist , he has mentioned reduction again but I’m scared to do so I don’

by Buzzm1 (Mar 23)

Kathy, TKIs, especially at the high starting dosage, are toxic medications. The more we take over the longterm the higher the probability of problems. There's a high likelihood that

by Kathyp (Mar 23)

Yes I am for the last 13 years . Why wouldn’t I still be taking it? It’s working so I haven’t changed drugs
Category: Uncategorised

Replies: 7

Last updated: 23 March 2021
Beulaparthiban on 23 March 2021

Category: Other conditions

Replies: 0

Last updated: 23 March 2021

Marriage proposal
by Beulaparthiban (Mar 23)

Hi everyone, greetings and peace in the name of Jesus Christ. Am here requesting an appropriate match for my sister who has been under imatinib medication. If anyone interested kindly contact this
Category: Other conditions

Replies: 0

Last updated: 23 March 2021
sandy craine on 19 March 2021

Category: About CML

Replies: 1

Last updated: 22 March 2021

iCMLf Conversation on CML-COVID-19 vaccines and CML
by johnw1001 (Mar 22)

Hi Sandy,
Thanks for posting this.
Hopefully this presentation might throw some light on the some of the issues and queries that exist for CML patients such as whether there is any preferred type of

by sandy craine (Mar 19)

Update on COVID-19 vaccines and CML
Join our two experts as they discuss key aspects on COVID-19 vaccines for patients with CML.
COVID-19 vaccine overview: Professor Steve Wesselingh, from the
Category: About CML

Replies: 1

Last updated: 22 March 2021
Justine on 22 February 2021

Category: Other conditions

Replies: 3

Last updated: 21 March 2021

Higher risk of osteoporosis?
by chrissie (Mar 21)

Hi
I asked this very question of my haem after breaking my humerus (2015), then a rib (2016) and finally a vertebra (2017) which led to a diagnosis of osteoporosis. He replied that imatinib

by Rick B (Mar 21)

I am a former college athlete and continued training and fitness until COVID-19 protocols. I try to walk 4 miles daily and do body exercises. I now have osteopenia and am on a 1200 mg daily calcium

by johnw1001 (Feb 23)

Hi ,
Perhaps the question might be rephrased as to whether the long term use of tki s might lead to decreasing bone density rather than whether CML leads to any damage to bones etc.I say this

by Justine (Feb 22)

Hi, does anyone know if we are at higher risk of osteoporosis because of our disease? My primary care doctor recently ordered some blood tests for general wellness but did not order a bone density
Category: Other conditions

Replies: 3

Last updated: 21 March 2021
Lisalater35 on 19 February 2021

Category: Getting help

Replies: 7

Last updated: 20 March 2021

So anybody else have this issue?
by Lisalater35 (Mar 20)

That’s very interesting Rick, thank you for responding. I asked Dr if ok to take with just water he said yes....

by Rick B (Mar 20)

After early experimentation (been on Imatinib for almost 3 years), I settled on 9 pm every night with a full glass of water as my daily dose routine. The longer I have been on this medicine the

by Sd (Mar 13)

I have the same issues and find additional food helps. Lately I have developed a lot of intestinal upset and gas. Does anyone else have this with imatinib? I have been on the drug for 18 months with

by israel (Feb 20)

I used to take my pills (imatinib) after dinner, and I kept it like this for a few years until I was told that the digestive system is at its peak around noon (lunch). Nowadays I take my pills after
Category: Getting help

Replies: 7

Last updated: 20 March 2021
Deni H on 17 March 2021

Category: Blood tests

Replies: 8

Last updated: 19 March 2021

No cytogenetics response to Imatinib
by RC Kirk (Mar 19)

Hi Denise,
Maybe you could get some encouragement if your consultant could explain your level of cytogenetic response more precisely. It sounds like it takes about a month for you to get your

by alexmcpee (Mar 19)

Hi Denise,
Sorry about that I misread that you had not had a cytogenic response for complete cytogenic response for some reason.
Yes the early days you are a pin cushion and for someone who hates

by Deni H (Mar 19)

Hi Alex
Thank you for replying.
My consultant says there's been no cytogenetic response at all although my bloods are now completely normal. We are to have a discussion on the 14th April once

by alexmcpee (Mar 19)

Hi Sandy
Oh sorry I see I read Cytogenic response as CCYR for some reason. Silly me again.
Alex
Category: Blood tests

Replies: 8

Last updated: 19 March 2021
steven7 on 18 March 2021

Category: Uncategorised

Replies: 2

Last updated: 19 March 2021

Covid vaccine for dasatinib
by steven7 (Mar 19)

Thank you John. I really appreciate your sharing.
I am in Canada where the vaccine roll out is slower than UK. The general priority here is also given to senior cohorts. then younger ones

by johnw1001 (Mar 19)

Hi Steven,
You dont say which country you in as that might affect the range of vaccines on offer.If you are in the UK then you would be offered either the Pfizer one or the Astra Zenica vaccine;

by steven7 (Mar 18)

Hi everyone,
Can someone share your experience of covid vaccine as patient taking dasatinib? Ideally, can you tell your age and the vaccine brand.
I might be able to take the shot, but not sure if
Category: Uncategorised

Replies: 2

Last updated: 19 March 2021
johnw1001 on 18 March 2021

Category: Treating CML

Replies: 0

Last updated: 18 March 2021

ASH Conference Proceedings December 2020
by johnw1001 (Mar 18)

Hi All,
For anyone new to CML it might be good to explain that every year in December in United States there is a major conference for hematologists worldwide where any advances in treatments
Category: Treating CML

Replies: 0

Last updated: 18 March 2021
xero on 17 March 2021

Category: Side effects

Replies: 0

Last updated: 17 March 2021

Sprycel and hair loss
by xero (Mar 17)

Hi,
I have been on Tasigna during 5 years (now on 300mg a day). Worked pretty good for me (PCR around 0.02) but I experienced progressive hair thining all around my head.
My doc offers me to
Category: Side effects

Replies: 0

Last updated: 17 March 2021
Toni on 31 January 2019

Category: Uncategorised

Replies: 10

Last updated: 17 March 2021

Leg pains
by TJD (Mar 17)

Hi ,its 20 years since I was diagnosed with CML ,I actually took part in the clinical trial for

Imatinib and I too experienced severe muscle pain,I was prescribed Quinnine Sulphate tablets

by Ray Sell (Mar 15)

Nigel, thank you for your information and warning. Now on 400mg imatinib my leg cramps aren't as frequent and my hand and toe cramps are gone, so I don't take anything. 2 weeks

by NigelD (Mar 11)

I've been on Imatinib (800 down to 400 mg) since 2000. The cramps started almost from day 1 and can be crippling in my hands and legs. Went on to Quinine Sulphate 300mg twice a day and that

by Vikram (Feb 8)

Same problem.....
muscle cramps, lang pain...

Diagnosis (end of 2007)
400 grm Imtinib.....
But
After 8-9 months pain gone automatically......
Last one year one time muscle cramps....... (
Category: Uncategorised

Replies: 10

Last updated: 17 March 2021