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Judithmary on 29 April 2020

Category: Uncategorised

Replies: 5

Last updated: 4 May 2020

Should I work during this lockdown
by MLD (May 4)

My other half has CML and received the NHS letter but he's still working. He's been in MMR for eight years with a BRC-ABL of 0.001% and when we spoke to his consultant she said he was low

by KeriF (May 2)

I am a nurse anesthetist in a relatively hard hit area and working on the front lines. I have intubated many patients with COVID. I haven’t taken any time off. Granted, I always have full PPE

by Judithmary (May 1)

That’s terrible. I am sorry to hear that.
I’ve just had another letter saying shield till July 24 ! It’s not from my consultant so I’m going to try and get in touch with

by Ade (Apr 30)

Hi I've been diagnosed 18 months now and I'm self employed as a motorcycle mechanic. I've had no choice but to go to work during this lockdown even if it's just to sit in an empty
Category: Uncategorised

Replies: 5

Last updated: 4 May 2020
Hannah Geddes on 26 April 2020

Category: Side effects

Replies: 5

Last updated: 3 May 2020

FATIGUE!
by alexmcpee (May 3)

Thank you very much. It feels like a long time coming hopefully the 2 year mark will put me there!

by Karthikeyan (May 3)

Hi alex, i wish you good luck. i hope your pcr result will put you in mmr this time. hannah, if we take high dose of tki,fatigue will be part of our life.

by alexmcpee (May 3)

Hey Hannah
I should have the result on the 22nd of May. I can’t say you ever get used to worrying about tests but they are there for our protection I tell myself over and over. Hopefully

by Hannah Geddes (Apr 30)

Hey Alex,
so nice to hear from you. Wow MMR.. I love those words! When will you find out?
Im exactly the same, even as soon as I wake up I feel like I haven't even slept and i'm in
Category: Side effects

Replies: 5

Last updated: 3 May 2020
SarahHarrington on 8 March 2020

Category: About CML

Replies: 6

Last updated: 3 May 2020

Eye bleed - has anyone had a similar issue?
by SarahHarrington (May 3)

Thank you very much for your responses. His eyes have cleared now luckily and he can read again. It took a few weeks to clear this time though! Hope all are keeping safe.

by bendicco (May 2)

Yes, I have had eye blood spots covering the entire white of my eye 2 times since on Gleevec. Looks really freaky but resolves itself in a few days.

by AlastairC (Mar 14)

During the 11 years I was on 400mg imatinib, I guess I had about one eye bleed a year; they all resolved themselves w/out any loss of vision within a couple of weeks. Have not had one since I

by Edward Cooper (Mar 10)

Sarah,
Just to recount my experience of eye bleeds into the white of the eye (sub-conjunctival haemorrhage), I have had these to both eyes over a long period (since 2012) but the occurrence
Category: About CML

Replies: 6

Last updated: 3 May 2020
kat73 on 1 May 2020

Category: Uncategorised

Replies: 2

Last updated: 2 May 2020

Has anybody on this forum actually gotten COVID-19?
by kat73 (May 2)

Hi, Scuba - Happy to hear of your friend's experience, but I'd really like to hear from any of us with CML on TKIs who have had it.

by scuba (May 2)

I know of only one person (friend) who had Covid-19. He was in France beginning of the year and came back with the infection.
He thought it was a flu and was "bed ridden" for 3-5 days

by kat73 (May 1)

. . . and lived to tell the tale? I would be very curious and interested to hear the details.
Category: Uncategorised

Replies: 2

Last updated: 2 May 2020
gbatalha on 29 April 2020

Category: Blood tests

Replies: 3

Last updated: 29 April 2020

BCR ABL 24 Months
by scuba (Apr 29)

This is why blood testing is so important, because it can guide you how much vitamin D you need on a personal basis. I presume you meant "IUs" daily.
To double your blood level (from 30

by gbatalha (Apr 29)

4000 DUs daily.
My levels are at low 30s ng/ml with the daily supplement.
PS - My skin is very dark, quasi-northern african

by scuba (Apr 29)

How much vitamin D3 do you take per day? Do you know your vitamin D blood level?

by gbatalha (Apr 29)

Hi everyone,
Just wanted to share my recent results to give everyone some level of comfort around variations of BCR-ABL levels (42 years old/400mg Imatinib daily/low risk at diagnosis):
12M - 0,150
Category: Blood tests

Replies: 3

Last updated: 29 April 2020
sandy craine on 14 April 2020

Category: About CML

Replies: 1

Last updated: 29 April 2020

Expert Opinion from the NCRI CML Subgroup, updated 23rd March 2020
by sandy craine (Apr 29)

EHA: Recommendations for specific hematologic malignancies
https://ehaweb.org/covid-19/covid-19-recommendations/recommendations-for-specific-hematologic-malignancies/
CML, TKI treatment and COVID-19

by sandy craine (Apr 14)

The latest UK government updates are listed here:
https://www.nhs.uk/conditions/coronavirus-covid-19/ and https://www.gov.uk/government/publications/covid-19/guidance
According to the above
Category: About CML

Replies: 1

Last updated: 29 April 2020
Sd on 27 April 2020

Category: Side effects

Replies: 2

Last updated: 28 April 2020

Propolis
by Sd (Apr 28)

Thanks Vicky. I am going to try it in my mouth. I will post my results.

by VickyK. (Apr 28)

Hi SD,

I don't know much about propolis but I use a propolis spray when I have sore throat and I haven't faced any problem so far. By the way I'm on nilotinib.

Take care,

Vicky

by Sd (Apr 27)

I have been having problems with stomatitis since late January. When I am off the imatinib, they subside. I really do not want to change drugs because the imatinib is working so well with my
Category: Side effects

Replies: 2

Last updated: 28 April 2020
Aeje10327 on 27 April 2020

Category: Uncategorised

Replies: 4

Last updated: 28 April 2020

Sprycel Reduction Question
by Tater1 (Apr 28)

Hi
Sorry I should have mentioned the name. I’m in N.J. and now see Dr Mauro at Memorial Sloan Kettering.

wishing you all the best!
Renee

by Aeje10327 (Apr 28)

I hope your numbers continue to drop on the lower doses. 3% is great. I was at 11% after 3 months.
Where do you get your care if you don't mind me asking? Are you in the US by any chance?

by Tater1 (Apr 28)

Hi.
I was diagnosed November 2019 and started on 100mg sprycel. My counts tanked and I had to stop taking it for several weeks, then was put back on 70mg. Again I was severely

by scuba (Apr 27)

Your doctor is misinformed.I was started at 70 mg initially and dropped to 20 mg after a week where I remained for many years. There is a great deal of data on sprycel efficacy at lower dose. In
Category: Uncategorised

Replies: 4

Last updated: 28 April 2020
scuba on 26 April 2020

Category: Uncategorised

Replies: 1

Last updated: 28 April 2020

On Switching to dasatinib from imatinib
by Nimbus2 (Apr 28)

Thank you, Scuba, for this. I am not sure how an "early switch" is interpreted in the context of the article. I am nervously awaiting the results of my shift from imatinib to dasatinib.

by scuba (Apr 26)

https://www.oncnet.com/news/early-switch-dasatinib-first-line-imatinib-m...
"Early Switch to Dasatinib From First-Line Imatinib May Benefit Patients With Ph+ CML"
Results reinforce the
Category: Uncategorised

Replies: 1

Last updated: 28 April 2020
Barbs on 30 January 2018

Category: Uncategorised

Replies: 12

Last updated: 28 April 2020

Zavie Millers zero Club
by Barbs (Apr 28)

Hello! did you manage to find your number? what's your name, maybe i could find it for you...

by Richard42 (Apr 25)

I’ve sent you a message directly. Thanks Barbs.

by Barbs (Apr 24)

hello. Did you find your number? maybe I have it listed; but I'd need your name

by Barbs (Apr 24)

Thanks for sharing this info.
Category: Uncategorised

Replies: 12

Last updated: 28 April 2020
Ontasigna on 27 April 2020

Category: Drug-drug interactions

Replies: 2

Last updated: 27 April 2020

Nilotinib | Multi vitamin and Minerals | Interacction
by alexmcpee (Apr 27)

Pineapple is fine. Just avoid grapefruit. In terms of vitamins many do take them. I try to get as much from food as possible although the vit d is harder. I eat eggs and the suns been out so need

by ColoradoGuy (Apr 27)

I am taking all of the above and have seen drops in BCR/ABL so I think it is fine. Not a lot of research done on my part so if you find out that it is a bad idea please post. I think it

by Ontasigna (Apr 27)

Hi All.,
Is it ok to take Multivitamin (A, B, C , Zinc, Magnesium etc) while on nilotinib? any interactions?
secondly, Is it ok to consume pineapple?
Category: Drug-drug interactions

Replies: 2

Last updated: 27 April 2020
POPPY on 17 December 2019

Category: Uncategorised

Replies: 19

Last updated: 26 April 2020

Poor Response in Nilotinib
by POPPY (Apr 26)

Hey All,
It's been 2 months since he switched from Nilotinib to Dasatinib 100mg. It's much more tolerable than Nilotinib.
We received his blood results and his platelets had gone down further to 59

by ColoradoGuy (Apr 11)

Well I think a month may not be long enough to make a determination but if it does turn out that Dasatinib does not work for him I would keep in mind that he reached MMR on Nilotinib and try to find

by POPPY (Apr 11)

After over a month of 100mg Dasatinib, his platelets decreased from 100+ to 82. With an increase in PCR and decrease in Platelets after a month on Dasatinib, could this be a sign of disease

by ColoradoGuy (Apr 7)

I believe that is a half log increase and the upper limit of lab error. It would be interesting to note whether he took any time off between medications while waiting for the next to arrive.
Category: Uncategorised

Replies: 19

Last updated: 26 April 2020
pat preston on 12 December 2009

Category: Uncategorised

Replies: 4

Last updated: 26 April 2020

More ideas for Nice petition
by Barbs (Apr 26)

Hello Pat am trying to contact all the members of Zavie's zero club

by annette ward (Dec 13)

One idea I had, is to send the website address for the e petition on a slip of paper with all my Christmas cards to friends, as this is a way to reach more people and get them to sign up.
My Mum has

by sandy craine (Dec 13)

Dear All,
I have arranged with Pat to send some text for her to use as we agreed to use the signatures to support our letter to the DH ministers.

However I am sure the same signatures could be

by Pesty (Dec 12)

Hi Pat, Thanks for all your work!
I have just taken a look at the e-petition site and you can still submit paper signatures under the same petition - see below. It may add weight if we use the same
Category: Uncategorised

Replies: 4

Last updated: 26 April 2020
Dustylloyd on 24 April 2020

Category: Uncategorised

Replies: 5

Last updated: 25 April 2020

Strange support.
by Dustylloyd (Apr 25)

Alex, it’s always a pleasure to hear from you, in these stressful times for everyone worldwide we all need good advice to cope with situations, you never let me down.
Cheers, Peter.

by alexmcpee (Apr 25)

Hi Peter
Me again. That will be because of the very same reason we have been put in the high risk group for COVID in the UK because we have Leukaemia not because we have CML. Luckily for us we have

by snowman 35 (Apr 24)

Your welcome!

by Dustylloyd (Apr 24)

Hi snowman,
in the last 4/5 weeks thanks to Cml Support members the positivity coming back in response has been uplifting, again many thanks.
peter
Category: Uncategorised

Replies: 5

Last updated: 25 April 2020
Barbs on 24 April 2020

Category: Uncategorised

Replies: 0

Last updated: 24 April 2020

Zavie Miller Zero club
by Barbs (Apr 24)

Hello! I hope you're all keeping well a coping with confinement
As I have some time on my hands, I'm trying to update my search for members of this famous club from days gone by.
Category: Uncategorised

Replies: 0

Last updated: 24 April 2020
Tbrand on 21 April 2020

Category: Uncategorised

Replies: 6

Last updated: 22 April 2020

Imatinib dose reduction
by AlastairC (Apr 22)

Buzz, I was not part of the Destiny Trial, but my specialist still wanted monthly PCR during reduction as the trial showed 20-30% of people lost MMR and needed to increase dose, and he felt that 3

by Tbrand (Apr 22)

Many good points, unfortunately the picture is 40 years ago, but aside from cml in real good health, knock on wood!

by Buzzm1 (Apr 22)

Tbrand, TKIs are toxic medications and the less we take over the longterm the better off we are likely to be. Just because you haven't had any problems with the high dosage so far doesn

by Tbrand (Apr 22)

Thanks for the input. I am from the US, Colorado. I am seen at the Rocky Mountain Cancer Center. My PCR has been consistent.02/.03 for 40 months. .028 was my first MMR value after 12 months
Category: Uncategorised

Replies: 6

Last updated: 22 April 2020
Tanya Cuffe on 20 April 2020

Category: Uncategorised

Replies: 3

Last updated: 21 April 2020

Dropping Sprycel further???
by scuba (Apr 21)

I would stay the course until you can reach your doctor. You are already at a very good low level (25 mg.).
Your bone pain may be unrelated to sprycel. Consider adding magnesium (at least 400 mg per

by Tanya Cuffe (Apr 20)

How long til you got there though,Scuba?Like I have been not detectable for 9 months,should I go lower now?My Haemo is virtually uncontactable at present..

by scuba (Apr 20)

I am currently taking 20 mg every other day. I feel no side effects.

by Tanya Cuffe (Apr 20)

Firstly,hope everyone’s ok during this horrid Covid time...Secondly,I need know when I can drop Sprycel further if remain no detectable as am getting flu/cold symptoms still on Sprycel along
Category: Uncategorised

Replies: 3

Last updated: 21 April 2020
Gian P on 20 April 2020

Category: Blood tests

Replies: 9

Last updated: 20 April 2020

My doctor increased dosage and now i feel like hell...
by snowman 35 (Apr 20)

You 'Re wright. 😉

by Gian P (Apr 20)

Sounds Good.
I will use the search, i am sure he covered it once or twice already.
Thank you again

by snowman 35 (Apr 20)

You should get Scuba's advice for this! He is the expert! I do not want to tell you something wrong...

by Gian P (Apr 20)

Okay
how much Curcumin should i take daily?
500 mmg okay?
Category: Blood tests

Replies: 9

Last updated: 20 April 2020
mamodei on 15 April 2020

Category: Side effects

Replies: 4

Last updated: 19 April 2020

Chest pain on Sprycel
by Gian P (Apr 19)

I have similar concerns with my upper back? Where the lungs are..
i am taking 70mmg Sprycel, i have some pain similar of acid reflux, especially when i lay down, is pleural effusion

by kat73 (Apr 17)

The lungs will sound clear. What they listen for is a diminution or dulling (muffling) of the sound, caused by the fluid in the lining of the lungs (not in the lungs, as you know.) AND,

by mamodei (Apr 15)

Yes the pain is worse laying down. I called on this a couple weeks ago and they did not think pleural effusion as my lungs have sounded clear when I've been for my appointments.

by David Fitz (Apr 15)

Hi Maria,
Is the pain worse when you are lying down? that’s typical of pleural effusion.

David.
Category: Side effects

Replies: 4

Last updated: 19 April 2020
Toff62 on 18 April 2020

Category: Side effects

Replies: 4

Last updated: 19 April 2020

Stomach cramps when taking imatinib
by Toff62 (Apr 19)

Hi John
Thanks for your feedback, it’s very informative. I will certainly look at increasing my levels of fluids and have two glasses when taking the tablet. It’s interesting to read

by johnw1001 (Apr 18)

Hi Jeremy,
I am not such a great veteran as many on this site but after 14 years on imatinib it would seem that various locations for cramps are par for the course and a quite common side effect

by Toff62 (Apr 18)

Hi David

Thanks for your reply. I do the same as you and take the tablet with my main meal. I don’t know whether I should be taking anti sickness tablets to help with this. It’s

by David Fitz (Apr 18)

Hi there,
Sorry to hear you’ve joined our club.
When do you take your imatinib? I found it best with food - the largest meal of the day.
David.
Category: Side effects

Replies: 4

Last updated: 19 April 2020