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MartinZA on 11 February 2019

Category: Treating CML

Replies: 6

Last updated: 12 February 2019

Bobbing about in MMR
by fiona vaughan (Feb 12)

I’m still waiting to feel grateful but I am not there yet. I was only diagnosed 3 months ago and at the time it didn’t really sink in and I just took the meds as I was told and carried

by kat73 (Feb 11)

Came in late here and never saw the deleted post. Am guessing, but I suspect there was some understandable venting of despair and anger. Whenever you hear the word "leukemia"

by MartinZA (Feb 11)

That is such a great response. Thank you so much for making me feel better and bringing some support to this support forum! Don't we all have bad days?!

by Damian Gabilondo (Feb 11)

Dear, I see that he is a man of numbers, me too, but I realized that not everything is a matter of numbers, statistics, percentages, answers, surveys and studies. The cure is in ourselves and how we
Category: Treating CML

Replies: 6

Last updated: 12 February 2019
Ros77q on 11 February 2019

Category: Uncategorised

Replies: 3

Last updated: 11 February 2019

Applying for australia
by johnw1001 (Feb 11)

I am sorry but am not able to advise you.
Some years ago I was involved with student recruitment into UK and at that time it was relatively straightforward for a dependent of a student who was

by Ros77q (Feb 11)

Thanks for the reply. My wife is studying there and want to be with her. Its student dependent visa. Will i be able to be with my wife and support her?

by johnw1001 (Feb 11)

Hi there,
I will not offer you any technical or other advice as I am not aware of which country you currently reside, but assuming that you are going in on a tourist visa there is no reason why your

by Ros77q (Feb 11)

Hi all my wife is in australia. I am overseas and want to be with her. I have cml and and taking dasatinib. My medication is entirely free. I do not pay anything. Will i get visa or will be refuse
Category: Uncategorised

Replies: 3

Last updated: 11 February 2019
Phuong Phuong on 6 February 2019

Category: Side effects

Replies: 10

Last updated: 9 February 2019

Indigestible, diarrhea - imatinib side effects
by Phuong Phuong (Feb 9)

Hi TJD
your story gives us inspiration and hope. Thank you so much!

by TJD (Feb 8)

Hi ,I actually did the clinical trial for Imatinib in 2001 and also.suffered with diarrhea,along with muscle cramps it was one of the main side effects.I.agree with others about Imodium ,luckily I

by Phuong Phuong (Feb 7)

Hi Ray, my boyfriend is on 400.
So good to hear you are doing fine now. We will try some of your and other member's advices. I hope they will work for my boyfriend.
Ray and all, I

by Phuong Phuong (Feb 7)

Hi Kat, Thank you so much for sharing your thought and experience.
Category: Side effects

Replies: 10

Last updated: 9 February 2019
Sonia0609 on 7 February 2019

Category: Children & young people

Replies: 8

Last updated: 8 February 2019

Plateaued with Imatinib
by Sonia0609 (Feb 8)

Thank you for your reply. All the responses have calmed my nerves. It's scary, especially the unknown. I will mention to my oncologist, however, if Nilotunib is the best option. Thank you for taking

by kat73 (Feb 8)

Sonia, this has happened to a lot of us. There are 5 TKI's, so the likelihood that one or more will work brilliantly for you is high. Tasigna is a reasonable next try, but be mindful

by Sonia0609 (Feb 8)

Hi John,
Thank you so much for your reply. I'm forever grateful for this forum!

That being said, the oncologist was hoping for quicker results. She felt that I should have been at a 3.5

by Sonia0609 (Feb 8)

Thank you so much for your reply. It's always nice to hear from someone who has gone through the same experience. I'm hoping my mutation results come back negative; however, what if it doesn't?
Category: Children & young people

Replies: 8

Last updated: 8 February 2019
Felix on 6 February 2019

Category: About CML

Replies: 5

Last updated: 7 February 2019

TRAVEL INSURANCE IN UK
by Toni (Feb 7)

Hi,
i used a company called All Clear and I thought they were excellent. I also managed to get reasonable quotes from age uk (I’m not old by any means) and stay sure. They all cover medical

by Felix (Feb 7)

Thank you very much ,will have a look at them,Denise.

by johnw1001 (Feb 6)

Suggest you try World First as they will cover all conditions.You will have to undergo medical screening, by phone usually, and one of the questions might be if you are undergoing chemotherapy

by Felix (Feb 6)

Hi Dusty ,thank you so much for taking the time to reply to me ,I will have a look at them .Cheers ,Keep well ,Denise.
Category: About CML

Replies: 5

Last updated: 7 February 2019
Ontasigna on 7 February 2019

Category: Treating CML

Replies: 6

Last updated: 7 February 2019

Help!! Unable to sleep due to anxiety
by Felix (Feb 7)

Hi,cut out caffeine and chocolate ,they keep me awake at night .Worth a try .

by Ontasigna (Feb 7)

Thanks so much Jax and Lukas. I am feeling positive now. Appreciate your support.
Jax- Is Ativan safe to take along with tasigna? Or Should be taken after couple of hrs?

by kali (Feb 7)

Great suggestions!
You can also tighten and relax each muscle group from head to toe. When finished focus on deep breathing and visualize the medicine attacking the cancer and as you breathe in

by scuba (Feb 7)

CML causing your anxiety?
I found that by taking 250 mg magnesium (as magnesium citrate or magnesium taurate) at bed time, it relaxed me and I sleep much better - back to normal. It also took care
Category: Treating CML

Replies: 6

Last updated: 7 February 2019
MartinZA on 4 February 2019

Category: Drug-food interactions

Replies: 3

Last updated: 7 February 2019

South-East Asian fruits and imatinib
by Lucas (Feb 7)

Great, martin! if you decide to come to fortaleza, send me a message! it's all fine here!

by MartinZA (Feb 4)

Hi Lucas
Great to hear from you again. I've just had a Brazilian friend here and have been thinking about planning my next trip to your country!
Thanks so much for this info - what a

by Lucas (Feb 4)

Hi, martin! hope you're fine! it's hard to talk about those exotic fruits, but i know that starfruit isn't an option, also dragonfruit is an CYP3A4 inhibitor, what may cause elevations

by MartinZA (Feb 4)

Hi everyone
Hope you're all doing well! This is just a quick question to find out if anyone knows about the interaction between imatinib and various exotic fruits native to Southeast Asia
Category: Drug-food interactions

Replies: 3

Last updated: 7 February 2019
Milagros Soriano on 5 February 2019

Category: Organising your life

Replies: 2

Last updated: 6 February 2019

Where to get free CML medicine?
by johnw1001 (Feb 6)

I think David is referring to the Novartis Oncology Patient Support and Financial Access Scheme which operates in certain countries where neither government nor insurance companies supplies

by David Fitz (Feb 5)

It very much depends where you live.
David.

by Milagros Soriano (Feb 5)

How to get free meds on CML ? The imatinib mesylate 400 mg. Is costly? Just diagnosed this Dec. 2018 and I am financially tight as i am the breadwinner and to add to the expenses, i just got out
Category: Organising your life

Replies: 2

Last updated: 6 February 2019
Ontasigna on 1 February 2019

Category: Treating CML

Replies: 4

Last updated: 6 February 2019

ECG - tasigna - dropped heart rate
by Ontasigna (Feb 6)

Thanks so much Eva.

by cmljax (Feb 3)

My QT and QTc both went up about the same as yours when I first started on 600 mg/day Tasigna in Oct 2016 - QTc went from 420 - 445 and is now 426 and I am not worried. This is not an

by Evelinka89 (Feb 2)

Hi,
tyrosinkinase inhibitors sometimes prolong QTc. Prolongation to 408 ms is harmless if you are otherwise ok, without any symptoms and could be a side effect of Tasigna. Usually normal

by Ontasigna (Feb 1)

Look for help. Kindly look into it.
Category: Treating CML

Replies: 4

Last updated: 6 February 2019
David Fitz on 31 January 2019

Category: Uncategorised

Replies: 2

Last updated: 4 February 2019

Falsified ICLUSIG / ponatinib traded globally
by r06ue1 (Feb 4)

Maybe they know something we don't know? ;)

by RC Kirk (Feb 1)

These counterfeiters deserve a really long time out in prison!!!
"If you are in possession of the above vaccines, please do not use." - Quoted from the WHO site. Funny, I've

by David Fitz (Jan 31)

Exceptionally important information below for CML patients taking Ponatinib / ICLUSIG.
https://www.who.int/medicines/publications/drugalerts/drug_alert-2-2019/en/
Confirmation that counterfeit drugs
Category: Uncategorised

Replies: 2

Last updated: 4 February 2019
Ros77q on 3 February 2019

Category: Uncategorised

Replies: 3

Last updated: 4 February 2019

Myelosuppression
by scuba (Feb 4)

Headaches can be a side effect of sprycel, but usually fades away over a few days. Mine only lasted a few days. Yours are lasting longer and may be due to something else.
What are your absolute (abs

by Ros77q (Feb 4)

Scuba, i can hear pounding heart. I can feel it in neck and head and have mild headache. Even if i climb 2 stairs my heartbeat rise and feel tired.

by scuba (Feb 3)

No, myelosuppression is not a sign of CML coming back. Achieving cytogenetic remission is excellent. You are doing well.
But you are on a high dose of dasatinib and in the beginning of treatment.

by Ros77q (Feb 3)

Hi there is myelosupression sign of disease coming back? I am on dasatinib and my blood vessel is pounding around my neck and head and cause mild headache. My blood count are going low. Or
Category: Uncategorised

Replies: 3

Last updated: 4 February 2019
robert langdrum on 3 February 2019

Category: Uncategorised

Replies: 1

Last updated: 4 February 2019

Sprycel (dasatinib) cost
by DawnD (Feb 4)

Hi, I received assistance from Bristol Myers Sprycel assist. Huge help for me!! Good luck sure hope it works for you.

by robert langdrum (Feb 3)

Hi. My son was diagnosed with CML when he was 10. He is 14 now. We have been most fortunate. He takes Sprycel 100mg with no side effects

Insurance complications now cause me to have to buy
Category: Uncategorised

Replies: 1

Last updated: 4 February 2019
David Fitz on 2 February 2019

Category: Uncategorised

Replies: 0

Last updated: 2 February 2019

Sandy Craine - forum absence due to family news
by David Fitz (Feb 2)

Our founding member, Sandy, has asked me to let all our members know why she has not been very active on the forum and is not likely to be for a little while.
Unfortunately Sandy's father
Category: Uncategorised

Replies: 0

Last updated: 2 February 2019
Sarah63 on 30 January 2019

Category: Treating CML

Replies: 3

Last updated: 31 January 2019

Brand new
by scuba (Jan 31)

Alistair,
Thank you so much for posting the link. I had a very good time listening to the "experts" response regarding fasting, dose and related.
For those who want to listen to the key

by AlastairC (Jan 31)

Sarah the question of fasting was discussed at the CML patient day last September. The clinicians' discussion is on this link, about 5 mins 45 seconds into the video. The question was

by David Fitz (Jan 31)

Hi, and welcome. The search box should return you the right result if you enter “fasting” into it.
David.

by Sarah63 (Jan 30)

Hello, I’m a brand new member, needing help to navigate this site. ATM, I am mainly interested in prolonged fasting and was following a thread by “Scuba” on the subject. I joined
Category: Treating CML

Replies: 3

Last updated: 31 January 2019
Tanya Cuffe on 30 January 2019

Category: Uncategorised

Replies: 8

Last updated: 31 January 2019

What does log increase mean?
by scuba (Jan 31)

100 is very strong. Have a blood test in one week (CBC) to check that your blood counts are not dropping too fast - especially neutrophils.
Myelosuppression is a side effect of sprycel that usually

by Tanya Cuffe (Jan 31)

Saw haemo ...wanted me start on 100 mg sprycel but told her bout the 70mg and then the drop to 40...she had not heard of that!Hope it does as its meant to and will let you know!

by Tanya Cuffe (Jan 30)

Thank you for all of that am a bit clearer bout it all.Will discuss with doc today and hope it will all go well .

by Tanya Cuffe (Jan 30)

I had my last test 3 months ago...will see what doc says today and thanks for advice!
Category: Uncategorised

Replies: 8

Last updated: 31 January 2019
kali on 24 January 2019

Category: Uncategorised

Replies: 8

Last updated: 31 January 2019

Blood test results
by kali (Jan 31)

Hi Kat! Good to reconnect with you!
Thanks for responding with how you explained your experience. That is the sort of thing I am wondering about.
There has been some discussion to switch to the

by kat73 (Jan 31)

Kali - I can only comment on your first question. I still have a small remaining pleural effusion on 20 mg Sprycel. The pulmonologist said he was pretty sure that it would never go away

by kali (Jan 30)

Do people still have pleural effusions on Sprycel 20 mgm or is it fairly rare?
If we start TFR and numbers start coming back, does starting over mean we have to wait several years again with

by scuba (Jan 25)

Kali,
Ideally you should be testing once a month while off drug. The most critical time is the next six months off drug where the probability of losing TFR is greatest. Dr. Cortes mentioned he
Category: Uncategorised

Replies: 8

Last updated: 31 January 2019
Ros77q on 30 January 2019

Category: Uncategorised

Replies: 4

Last updated: 30 January 2019

Blast phase and allo-sct
by Job Guerra (Jan 30)

I have been following the blog below which is very informative regarding some of the experiences post transplant. Naturally everybody's experience is different and I only point it out

by Lucas (Jan 30)

Hi, Ros. your doc is right, just a very few have long term responses to tki after going throught blast phase. Good luck on your BMT! Hope all goes well!

by Ros77q (Jan 30)

Thanks julia. I askesd the same. But doc suggest me to go for transplant for long term survival. And only staying on tki wouldnt be effective as the disease would come back shortly. I am 31 and have

by Julia.K (Jan 30)

If I were you, I would definitely try to continue TKIs, bone morrow transplant is very serious and risky procedure, if you are young and have no other diseases you may recover quickly, but still,
Category: Uncategorised

Replies: 4

Last updated: 30 January 2019
flanders2 on 11 January 2016

Category: Treating CML

Replies: 8

Last updated: 30 January 2019

Blast Crisis CML
by Ros77q (Jan 30)

Hi there i was diagnoses in chronic phase and later develop to bp. I achieve second cp with dasatinib and in cytogenetic remission now. I am about to have my bmt very soon. Hope it goes well and

by darley (Jan 17)

^ Couldn't agree more with some of the sentiments expressed in your post Sandy.

Particularly "Survival often depends on getting the right information and that is not always as

by sandy craine (Jan 15)

Hi Courtney,
My knowledge of US geography is not that good...but MD Anderson Cancer Centre in Houston is one of the premier centres- including for CML and the Acute Leukaemias - it is also a premier

by Lucas (Jan 13)

Courtney, first of all, i'm sorry about your dad and i wish very good luck for him. Second: there's a great forum in the US with good people that are able to help you. here's the link:
Category: Treating CML

Replies: 8

Last updated: 30 January 2019
Frenchguy on 15 May 2014

Category: Uncategorised

Replies: 31

Last updated: 30 January 2019

Need Help
by Ontasigna (Jan 30)

Thanks David and Job. Appreciate your response.
Its been a month I started off with Nilotnib - 800 mg. Praying for the optimal response.
How long does rbc/wbc/ Platelets to come down to normal

by David Fitz (Jan 29)

Hi,
I was on imatinib at the time. 400mg.
I didn't have a test at exactly 3 months, but I was at 76% at 2.5 months and 41% at almost 4 months.
I then started dasatinib and while I

by Job Guerra (Jan 29)

Hello. I know your question was for David but In my experience I would not switch to anything after 3 months unless your PCR is not moving at all in which case I would quickly switch.
I

by Ontasigna (Jan 29)

Hi David
When you didn't hit 3 month response of < 10%. Which tki were you on and which one you switched to.
What % of bcr abl were you at 3 months?
Category: Uncategorised

Replies: 31

Last updated: 30 January 2019
Dustylloyd on 23 January 2019

Category: Blood tests

Replies: 11

Last updated: 30 January 2019

Nilotinib dosage
by Dustylloyd (Jan 30)

Hi Lucas, thanks for the reply, you started exactly 1year before me on 800mg Nilotinib and like you Imatinib didn’t have the effect my doctor was looking for and hence I have been on Nilotinib

by Lucas (Jan 29)

Hey, dusty! 800mg is/was the dose for those who were intolerant/resistant to imatinib, as i was! i started 800mg nilotinib in september/2014 and still on it, despite been under MMR4 most of that

by Dustylloyd (Jan 29)

Thanks cmljax and every one at Cml Support group, you’re replies to any questions are so helpful, it’s very reassuring that as a member of the Cml “club “ support is here,

by cmljax (Jan 29)

You don't have to reach MR4.5 to begin dose reduction. You might feel better about dose reduction if you are at MR4.5, but many of the trials required only MMR (MR3.0). Dcotors are
Category: Blood tests

Replies: 11

Last updated: 30 January 2019