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scuba on 17 March 2020

Category: Uncategorised

Replies: 8

Last updated: 20 March 2020

CML personal update
by Jacqueline Allmark (Mar 20)

Should I request immunisation against pneumonia from my GP I had flu vaccine last year I had this thought as Corona virus symptoms can develop into a bacterial pneumonia immunisation might be useful

by onekayaker (Mar 18)

Excellent! I will be following your progress. When stop your tki I hope the withdrawls are slim to none. Such a low dose hoping for zero issues.
Steff

by Vijay Kumar Verma (Mar 18)

Hi SCUBA ,I really loved ur Phd's and upper &bottom one.wisdom coated in humor.wishing u health & happiness .you have transcended from the plane of knowledge to wisdom.keep it up,waiting for

by Felix (Mar 18)

Hi Nimbus ,yes I remember it very well being on Imatinib,what a nightmare that was ,I couldn't go out anywhere without taking our friend Imodium.Dasatinib is so much better ,take care and Keep
Category: Uncategorised

Replies: 8

Last updated: 20 March 2020
shelly on 19 March 2020

Category: Side effects

Replies: 0

Last updated: 19 March 2020

Can anyone help please stuck on Cruise Ship in Hawaii
by shelly (Mar 19)

Hi all

Husband is on 140mg sprycel per day.

We have been stuck on this cruise ship for 3 weeks and not allowed into any ports on the Norwegian jewel. We are on route to Hawaii now but
Category: Side effects

Replies: 0

Last updated: 19 March 2020
onekayaker on 18 March 2020

Category: Uncategorised

Replies: 0

Last updated: 18 March 2020

Question about magnesium
by onekayaker (Mar 18)

I was on bestvite's website comparing prices to order some vits and I saw magtein magnesium L-threonate. Higher price. Anyone use this or just regular magnesium supplements? I
Category: Uncategorised

Replies: 0

Last updated: 18 March 2020
mahamud41 on 15 March 2020

Category: Side effects

Replies: 1

Last updated: 17 March 2020

Dasatinib and Pulmonary Hypertension
by sandy craine (Mar 17)

You could contact the Max Foundation and ask if your brother qualifies for assistance/advice with access to nilotinib or bosutinib.
Sandy

by mahamud41 (Mar 15)

Hellow, I am Dr Mahamud from Bangladesh.

My 21year old younger brother is sufferi g from CML from 2009. He is facing following problem regarding his treatment.
1)Imatinib(Gleevec) was
Category: Side effects

Replies: 1

Last updated: 17 March 2020
Dustylloyd on 16 March 2020

Category: Uncategorised

Replies: 6

Last updated: 17 March 2020

Corona virus
by sandy craine (Mar 17)

Please read the current advice from NCRI CML Subgroup pinned at the top of this page which I will update later today. We are certainly entering an era of profound behavioural change. There will be

by MLD (Mar 17)

Hi, I'm a newcomer to the forum! My husband has had a MMR for nearly eight years now, but obviously we were very concerned when we saw the advice last night, as he's also a teacher! We

by Dustylloyd (Mar 17)

Just to say a massive thanks to you all for giving me your take on this strange, stressful situation every one is in, but yesterday’s broadcast by are prime minister with his advisers when

by scuba (Mar 16)

As a free society where our freedoms have long been tested by enemies we can see, it is hard to fight against an enemy you can not see. The Caronavirus is not new in and of itself. We have been
Category: Uncategorised

Replies: 6

Last updated: 17 March 2020
BDT on 29 February 2020

Category: Uncategorised

Replies: 13

Last updated: 15 March 2020

Recently Diagnosed
by Jacqueline Allmark (Mar 15)

Has anyone else got debilitating mouth and throat ulcers?

by Patch (Mar 13)

Hi Pigeon.
Thank you for your reply and the extra advise. Its great having this site to be able to connect to people who are helping one another with all this help, advise and support. I like other

by Sunny (Mar 8)

Hello Patch,
As far as I know, pomegranate is also prohibited to consume for us CMLers, same as grapefruit.
I was told so by both my CNS and oncologist.
Other 'prohibited' fruits are Seville

by Patch (Mar 8)

Hi,
I am 65 and was diagnosed in August 2017 I was advised by my consultant to take imatinib Accord 400mg x1 a day at the same time with food and a pint of water, to also stand up for 30 minutes so
Category: Uncategorised

Replies: 13

Last updated: 15 March 2020
Rick B on 5 March 2020

Category: Uncategorised

Replies: 16

Last updated: 14 March 2020

UK and Coronavirus
by David Fitz (Mar 14)

Any time! There’s a spare room in my house waiting to be filled.
D.

by scuba (Mar 14)

Hi David,
Sign us up too!
(for your giving us all a tour). It's been way too long since my wife and I spent time in a real pub. Would love to visit Da Mario's Italian in Kensington/

by David Fitz (Mar 14)

I think that’s a smart move. Forgetting infection problems, London and the rest of the country isn’t exactly in lockdown but you won’t get the experience you would normally get. It

by Rick B (Mar 14)

Thanks to everyone who contributed to this thread. Because of the situation, we have now decided to cancel our plans to travel to the UK... for now.
Category: Uncategorised

Replies: 16

Last updated: 14 March 2020
mayita on 13 March 2020

Category: Treating CML

Replies: 5

Last updated: 14 March 2020

IT351 mutation
by David Fitz (Mar 14)

Yep - officially it’s still 45mg I believe. Ariad / Incyte really shot themselves in the foot because pricing was based upon a 45mg dose.
That turned out to be too much, and their reps can

by RC Kirk (Mar 14)

I seem to remember reading that the new starting dose is 15 mg/day, whereas the original was 45. Hopefully the side effects are much reduced at 15 mg.
Edit: I think maybe this is what I

by johnw1001 (Mar 14)

Hi,
In addition to Davids comments it is worth stating soon after giving approval in USA the FDA issued a so called "black box warning" largely based on the risks of vascular occlusions (

by mayita (Mar 13)

Thank you David,
So it sounds that I will be given Ponatinib in preparation for the BMT. I hope my body can take it.
Thank you,
Category: Treating CML

Replies: 5

Last updated: 14 March 2020
scuba on 12 March 2020

Category: Uncategorised

Replies: 9

Last updated: 14 March 2020

Additional data on Coronavirus risk
by scuba (Mar 14)

Romo!
Where have you been!? We miss you.
Glad you are back and joining the conversation.
I don't understand - but perhaps it's the name. Corona is cool.
Reality is, people who get it

by Romo (Mar 14)

I heard that an astroid as big as the moon is on a collision course
to earth at 1000 kilometers a second. Any time now. BANG!
A big tsunami or earthquake, A volcano. The sun will burn out

by kat73 (Mar 13)

I believe what Fauci meant is that among those noticeably stricken (sick), this coronavirus is showing a mortality 10 times that of influenza. That may or may not change with the number of

by scuba (Mar 12)

I don't think it would make any difference. The only reason to lower your dose is to lessen any side effects and lower your toxicity profile. If you are undetectable on 40 mg, there is a very
Category: Uncategorised

Replies: 9

Last updated: 14 March 2020
scuba on 13 March 2020

Category: Uncategorised

Replies: 0

Last updated: 13 March 2020

Our immune system in the age of coronavirus ...
by scuba (Mar 13)

https://asm.org/Articles/2019/May/Measles-and-Immune-Amnesia
I thought it might be helpful to recall how our immune system is designed to function in the age of Coronavirus.
The article linked above
Category: Uncategorised

Replies: 0

Last updated: 13 March 2020
koralia.pappi on 4 March 2020

Category: Blood tests

Replies: 8

Last updated: 13 March 2020

Ways to measure D3
by onekayaker (Mar 13)

Thanks and yes I use k2....Full Spectrum puts out a k2 with mk4 and 7. I was taking k2 twice a day same as the d3.

by scuba (Mar 11)

Hi Steff,
Stopping is o.k. - it takes months for vitamin D to drop only by half - and it takes months to build. Make sure you are taking vitamin K2 every day as well (200 mcg). K2 uses D as it moves

by onekayaker (Mar 11)

ok I will go to 5,000 ui per day. I am a bit afraid to stop completely since working at a airport now I come into contact with many people. I miss the solitude of my old career.

by scuba (Mar 6)

I had that happen once where I tested at 100 (transition from winter to spring). What I did was stop taking vitamin D3 completely for 3 weeks and re-test.
It takes about 60 days for 1/2 of vitamin D
Category: Blood tests

Replies: 8

Last updated: 13 March 2020
mozart8 on 5 March 2020

Category: Drug-drug interactions

Replies: 3

Last updated: 12 March 2020

sprycel and zithromax
by Philiptibbs (Mar 12)

Yes me too I had Bronchitis and had a Zpack and no bad side effect for me..

by ipmaki (Mar 12)

I recently had a sinus infection and was prescribed zpack. I continued to take sprycel while taking the zpack with no adverse effects. Only the usual stomach issues with antibiotics.

by sandy craine (Mar 12)

Did your doctor tell you that your 'lung infection' might be a common side effect of dasatinib (Sprycel)? If it is a side effect then you should ask why you are being prescribed zithromax.

by mozart8 (Mar 5)

hello everyone, hope everyone is doing well and feeling fine today. yesterday i got the results of a lung cat scan and have unfortunately developed a lung infection. the pulmonologist
Category: Drug-drug interactions

Replies: 3

Last updated: 12 March 2020
Parklife on 28 November 2015

Category: Uncategorised

Replies: 14

Last updated: 12 March 2020

Update and withdrawals?
by sandy craine (Mar 12)

Pam... why has your dad had his TKI therapy stopped? I am not aware that withdrawal syndrome included severe dizziness and blurred vision.
Sandy

by Pdl (Mar 9)

Thank you for your post Sandy. In any of your research did you happen to run across severe dizziness and blurred vision as a withdrawl symptom from imatinib? My Dad is 80 years old and stopped his

by wshi2001 (Dec 6)

hi, Darley,
I totally agree with you that some doctors have diagnostic challenge. Before I was diagnosed by an more experienced doctor, I first went to another doctor.

by darley (Dec 5)

Piece of advice... Don't put up with "it's just side effects then".
I hate diagnosis by guess work or presumption or the lazy and inept. Nearly lost my life because of
Category: Uncategorised

Replies: 14

Last updated: 12 March 2020
Tanya Cuffe on 9 March 2020

Category: Uncategorised

Replies: 5

Last updated: 10 March 2020

Still undetectable on 25 mgDasatinib!Scuba was right!
by scuba (Mar 10)

I am about to be TFR. I actually went without Sprycel this month awaiting a prescription refill. I had a PCR blood draw this morning. We'll see if I remain undetected after one month. I may just

by Tanya Cuffe (Mar 9)

Haven’t seen her for months,Scuba,due Corina virus.Shes Asian as are most of her patients.Pretty sure she would be most surprised (and pleased:) that lower dose Sprycel is working,as she had

by Tanya Cuffe (Mar 9)

Haven’t seen Doctor due shes Asian and has many Asian clients so has cancelled our last 2 appointments,due Corona Virus so she just sends me blood forms and then she emails me.Denise,I sent my

by Felix (Mar 9)

Hiya Tanya ,fabulous news do you feel any better with the lower dose ,bet your doctor wasn't happy being proved wrong .I am just waiting for my latest blood results .My Doc scared of reducing my
Category: Uncategorised

Replies: 5

Last updated: 10 March 2020
ShawnJ on 3 March 2020

Category: Side effects

Replies: 6

Last updated: 8 March 2020

Possible Heart Problems Sprycel
by jgionet (Mar 8)

Shawn,
I was diagnosed in January of 2016. I was 45. I am also an insulin dependent diabetic since I was 20. I also had high blood pressure controlled with multiple meds. I

by ShawnJ (Mar 4)

Tom,
Talked to the doctor today about dose reduction, denied again. He wants me to stick it out until I get a couple PCR results under my belt. He is still of the opinion that hitting the illness

by ThomasS (Mar 4)

Shawn, I felt terrible on 100mg. I had a hard time, but insisted and talked my Dr into dropping to 70mg then 50mg and so far for the past year everything is good with my counts... nothing has

by Aeje10327 (Mar 4)

I am on 100 mg of sprycel and at times I can feel my heart beat in random places. It has been most consistent in my lips. Super bizarre. I am not sure if what I'm experiencing is anything close to
Category: Side effects

Replies: 6

Last updated: 8 March 2020
sandy craine on 8 March 2020

Category: Uncategorised

Replies: 1

Last updated: 8 March 2020

2020 iCMLf Goldman Prize is awarded to Professor Jane Apperley
by David Fitz (Mar 8)

Such a fitting recipient.
Jane isn’t my doctor, but I have met her several times and she has given me fantastic advice. When thinking of starting a family, I asked her (at a conference

by sandy craine (Mar 8)

"Jane has been one of the leaders in CML research for many years. She has helped us not only develop better therapies for patients with CML, but with thorough, thoughtful and innovative
Category: Uncategorised

Replies: 1

Last updated: 8 March 2020
johnw1001 on 10 May 2019

Category: Side effects

Replies: 4

Last updated: 8 March 2020

Peripheral neuropathy associated with long term imatinib therapy
by Arlene (Mar 8)

Hi,
I was diagnosed just this last September, female, 25. My levels were very bad, 52%. I took hydrourea for the first two weeks until they figured out I had CML. They then prescribed me Imatinib

by chrisbishop55 (Jan 15)

I have been diagnosed with peripheral neuropathy in my feet and legs after having one very painful ankle, swollen and tight skin. It was thought at first that I had damaged a ligament or

by Olivia (Jan 12)

I found this very interesting, although the symptoms described aren't exactly the same as mine. I have been on imatinib for over 10 years now, and my PCR results are good, so I don't

by ShawnJ (Jan 10)

John,
This is something that I am curious about because I have been experiencing symptoms that could be considered Peripheral Neuropathy but I have not been diagnosed. I am 34, I have been on
Category: Side effects

Replies: 4

Last updated: 8 March 2020
David Fitz on 26 February 2020

Category: Uncategorised

Replies: 2

Last updated: 5 March 2020

Welcoming Richard Willoughby as a new Trustee of CML Support
by Richard42 (Mar 5)

Belated thanks to David and all for the welcome as a trustee. I am looking forward to helping out with some of the behind the scenes activities, as David puts it.
Best
Richard

by snowman 35 (Feb 27)

Welcome Richard!

by snowman 35 (Feb 27)

Welcome Richard!

by David Fitz (Feb 26)

We have invited Richard Willoughby (Richard42) to become a new Trustee of CML Support UK, and he has kindly accepted.
Much of the work we do at CML Support is “behind the scenes”
Category: Uncategorised

Replies: 2

Last updated: 5 March 2020
izhamredza on 2 March 2020

Category: Side effects

Replies: 4

Last updated: 5 March 2020

Nilotinib Side Effects
by izhamredza (Mar 5)

As for me, only my hair and my body hair was affected meanwhile my eyebrows stays the same. Anyway, thank you for your response.

by izhamredza (Mar 3)

Yes my PCR is below 0.1 now. I’ll talk to my doctor on reducing the dosage. Thanks for your response!

by Dustylloyd (Mar 2)

Hi Izham I’ve been on 800mg per day for nearly 5 years and the only change I’ve noticed (thankfully) appearance wise iv noticed is thinning of eyebrows, but my wife has commented my hair

by ColoradoGuy (Mar 2)

First I think that 800mg daily is very high dose for Nilotinib. I'm not sure that I have heard of somebody taking that high of a dose. I am on on 600mg and can't wait when God
Category: Side effects

Replies: 4

Last updated: 5 March 2020
David Fitz on 4 March 2020

Category: Treating CML

Replies: 0

Last updated: 4 March 2020

European Leukaemia Net 2020 Treatment Guidelines for CML
by David Fitz (Mar 4)

You may have spotted that ELN have released their long awaited update to their guidelines for treating CML. It’s quite a long document, but I’ve given it a read and here are some of the
Category: Treating CML

Replies: 0

Last updated: 4 March 2020