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MartinZA on 16 August 2017

Category: Side effects

Replies: 13

Last updated: 24 April 2021

Benign lymph node swelling resembling lymphoma
by MartinZA (Apr 24)

Hi Craig
Sorry for the late reply - I don't check this forum as often as I should! I hope you are getting on well with your decision as it is a tough one.
Just to answer your question: I took

by Craig747 (Apr 18)

Thanks sounds good- email just sent to the address jms.ny.2021@gmail.com so now you have my contact as well. We got this!!

by deraj14 (Apr 18)

Hi Craig, Thanks for your reply -- sorry we are both in this predicament, but it is comforting to know that there are others who are having similar experiences. What is your reasoning for

by Craig747 (Apr 18)

Hi Deraj - thank you for sharing your experience and I am sorry that you are also having the same reaction. I am also not in favor of changing therapies since my response has been been really good
Category: Side effects

Replies: 13

Last updated: 24 April 2021
SS86 on 22 April 2021

Category: Side effects

Replies: 5

Last updated: 23 April 2021

Swere Puffiness around eyes and face - Dasatinib 100mg
by johnw1001 (Apr 23)

It is very normal with tkis to have what is called peri-orbital odema or swelling of the tissues around the eyes.In addition some have irritated eyelids or blepharitis.You could try a warm

by SS86 (Apr 22)

Take care Alex.

by alexmcpee (Apr 22)

No problem yes same for me. I had one eyelid recently very swollen below the eye. It persisted for 4 weeks and then went. I am suffering from bad hayfever this year for some reason and they’re

by SS86 (Apr 22)

Thanks Alex for responding.

The puffiness is more in the morning and comes down a bit by the evening. Not sure how and why.
Thanks
Category: Side effects

Replies: 5

Last updated: 23 April 2021
MANNI OBEROI on 21 April 2021

Category: Blood tests

Replies: 3

Last updated: 22 April 2021

How much corona effects CML patients
by MANNI OBEROI (Apr 22)

Thanks alex....thank you so much for the support

by MANNI OBEROI (Apr 22)

Thanks alex....thank you so much for the support

by alexmcpee (Apr 22)

No different from the general public that dont have CML if your CML is responding to TKI. Several people on here got COVID and recovered fine. The rules apply the same for us some will get it worse

by MANNI OBEROI (Apr 21)

Just want to know the immune system of CML patients is able to fight covid or not
Category: Blood tests

Replies: 3

Last updated: 22 April 2021
Sd on 21 April 2021

Category: Side effects

Replies: 1

Last updated: 22 April 2021

Cardiac issues with imatinib
by alexmcpee (Apr 22)

That’s surprising I thought only 2nd gen drugs come with that warning. Didn’t realise it relates to Imatinib too. From what I understand that’s the safest of all drugs as it’

by Sd (Apr 21)

I have developed prolonged QT interval after 19 months on imatinib. I have no underlying cardiac issues, my echo cardiogram was normal. Apparently this occurs in 30-40% of people taking imatinib. It
Category: Side effects

Replies: 1

Last updated: 22 April 2021
Alaina on 3 February 2021

Category: Uncategorised

Replies: 66

Last updated: 22 April 2021

Covid Vaccine
by Alaina (Apr 22)

Thanks everyone for sharing your experiences. It gave me the reassurance that I needed. I have now taken both my vaccines. No problems with the first, but probably too soon to tell for the second.

by Buzzm1 (Apr 21)

Wanted to mention that today (Wednesday, the 21st) will highly likely set a World Record in New Cases/day. The current record is 845,424.
Tuesday, April 20, 2021
World 143,536,452 +825,

by Buzzm1 (Apr 20)

Read Trey's post from the LLS CML forum:
https://communityview.lls.org/statuses/8921

by Sunny (Apr 19)

Thank you Sandy, I guess we just have to hope for the best, but I am sceptical.
pigeon
Category: Uncategorised

Replies: 66

Last updated: 22 April 2021
CharlieL on 21 April 2021

Category: Treating CML

Replies: 1

Last updated: 22 April 2021

Beyond TKIs?
by alexmcpee (Apr 22)

You have nothing to worry about clinically no difference between 0.016% and MR4. If you start to loose MMR altogether I'd say thats when to start worrying, but even then as long as you

by CharlieL (Apr 21)

Hi everyone,
31 year old father of one here. I've been on nilotinib/Tasigna since 2016 and got a pretty good response to it (to start off with). I even managed to get beyond
Category: Treating CML

Replies: 1

Last updated: 22 April 2021
chris23 on 19 April 2021

Category: Blood tests

Replies: 6

Last updated: 21 April 2021

Three-month lag on PCR results
by snowman 35 (Apr 21)

Imagine that I live in Greece and I wait at least 45 days!

by hannibellemo (Apr 20)

I'm always so amazed when I read about the length of time it takes to get PCR results since it only takes about 20 minutes to run the test. I live in a small town and our hospital has a contract

by israel (Apr 20)

You could get in contact with the lab that performs your tests to get to understand how the test pipeline, from collection to processing time.
In my understanding there are a few steps before you

by chris23 (Apr 19)

Thanks both. I used to get my bloods done two-three weeks before a consultation but was advised to aim for seven to 10 days instead, which is what I've been doing since.
I imagine labs are under
Category: Blood tests

Replies: 6

Last updated: 21 April 2021
Rae_B on 7 April 2021

Category: Uncategorised

Replies: 11

Last updated: 21 April 2021

Diagnosed with CML - feeling overwhelmed
by Rae_B (Apr 21)

Kat/Pianogrl44
Thank you both for your words. I appreciate everything you've said.
As a newbie at this, I obviously don't want to keep re-hashing the same questions that I'm sure

by Sunny (Apr 18)

Hi Kat, don't retreat into the background yet..., your answer is well said and spot on.
I hope you have helped Rae to put things into perspective.
pigeon.

by kat73 (Apr 17)

Glad you're feeling better. It is the experience of many of us that the initial horribleness does indeed wear off and our bodies adjust. Hope you're over the hump.
I just

by pianogrl44 (Apr 16)

It will definitely take time to process everything and I try to avoid using the word “should” as in “I should be feeling better about things”. Sometimes you have to
Category: Uncategorised

Replies: 11

Last updated: 21 April 2021
bendicco on 21 April 2021

Category: Uncategorised

Replies: 0

Last updated: 21 April 2021

RETURN TO OFFICE DURING COVID
by bendicco (Apr 21)

I am a solo provider of mental health and struggling with decision to return to in person therapy sessions. My numbers have been not detectable for awhile now. My office is in a building that has
Category: Uncategorised

Replies: 0

Last updated: 21 April 2021
snowman 35 on 20 April 2021

Category: Food & fitness

Replies: 2

Last updated: 21 April 2021

Vitamin K2 mk7 from Natto?
by snowman 35 (Apr 21)

Hi Scuba! Thank you for your response!

I started vitamin d3 at about 15/12/2020 after checking my levels. It was at 38 ng/ml. So I took 4000iu per day without k2.After two months I stopped to

by scuba (Apr 20)

Why did you stop taking D3? what was your D level when you stopped?
Vitamin K2 is formed by bacteria during the fermentation process. Natto has the highest amount naturally around 1000 mcg per 100

by snowman 35 (Apr 20)

Hi everyone I tested my vitamin D and and it is 41ng/ml(I stopped taking D3 for 2 months) so I will start again 4000iu and I want to take k2 to. I do not know if all k2 mk7 supplements are from
Category: Food & fitness

Replies: 2

Last updated: 21 April 2021
daniellep on 18 April 2021

Category: Blood tests

Replies: 3

Last updated: 20 April 2021

Hospitalisation
by alexmcpee (Apr 20)

Anytime. No no quite the opposite actually. The 1st 3-6 months is a little bit like that though. Monthly blood draws at first and then when they stabilise you’ll be on either 3 or 6 monthly

by daniellep (Apr 19)

Thank you so much for your positive response! I am in chronic stage. I just envisioned being hospitalised all the time. Glad this is not the case!!

by alexmcpee (Apr 19)

Sorry to hear of your diagnosis. Once you get over the shock (which can take sometime) you’ll begin to realise quite quickly this is a massively treatable and managed condition. A bit like

by daniellep (Apr 18)

Hi. I have been diagnosed with CML in the last few weeks and am very unclear about how my immune system will be affected. If I get a UTI or chest infection - will I have to go to hospital, or can I
Category: Blood tests

Replies: 3

Last updated: 20 April 2021
bendicco on 18 April 2021

Category: Uncategorised

Replies: 1

Last updated: 19 April 2021

Efficacy of Covid vaccine
by alexmcpee (Apr 19)

I am told we are not immune suppressed if we are responding well to TKI and levels are normal and BCR low I.e CCYR and below. So with that info alone I would hope to have the same or similar

by bendicco (Apr 18)

Curious if anyone knows if COVID vaccine is as effective for CML patients as for those with no underlying medical condition?
Category: Uncategorised

Replies: 1

Last updated: 19 April 2021
SorubhMaggo on 19 April 2021

Category: Treating CML

Replies: 0

Last updated: 19 April 2021

Swelling in foot on Dasatinib
by SorubhMaggo (Apr 19)

Hello there,
I have been on 100mg Dasatinib for almost 3.5 years. So far so good!
10 days before I got hurt with a nail under my left foot. The wound was well healed in a few days but leaving behind
Category: Treating CML

Replies: 0

Last updated: 19 April 2021
ckquinn on 19 April 2021

Category: Uncategorised

Replies: 0

Last updated: 19 April 2021

Withdrawal symptoms
by ckquinn (Apr 19)

Morning, after 6yrs treatment I'm currently on Dasatinib 50mg daily, and blood results have been excellent from year 2. I'm considering trying to come off treatment and would be interested to hear
Category: Uncategorised

Replies: 0

Last updated: 19 April 2021
steven7 on 17 April 2021

Category: Drug-food interactions

Replies: 2

Last updated: 18 April 2021

Dasatinib and energy drink (redbull)
by steven7 (Apr 18)

Hi Lavinia,
Thanks for sharing the experience. I sometimes get fast heart beat after taking coffee.
For increasing energy, coffee doesn't do much for me though. So I think some other choice are

by Lavinia (Apr 17)

Hi Steven,
I am of course not a doctor so this is just my personal experience, but I’ve always had an energy drink in the morning to get going instead of coffee. I have about a 500ml can of V

by steven7 (Apr 17)

Hi all,
I wonder if we are taking dasatinib, can we get the energy drink, such as red bull, when we need a clear head for some work.
Is there any interaction between the two?
Thanks,
Steven
Category: Drug-food interactions

Replies: 2

Last updated: 18 April 2021
JacqJohn on 14 April 2021

Category: Drug-food interactions

Replies: 1

Last updated: 15 April 2021

Supplements While On Imatinib
by PhilipDavid (Apr 15)

Hi

Re supplements. I just check with my consultant at Hammersmith Hospital .
So just check with doctor.

Philip Collins

by JacqJohn (Apr 14)

Hi All,
I’ve been diagnosed with CML since Nov 2017 and been on Imatinib 400mg from beginning until now...
PCR results as follows:
April ‘18- 1.17%
Oct’18 - 0.43%
April
Category: Drug-food interactions

Replies: 1

Last updated: 15 April 2021
sandy craine on 6 March 2021

Category: Other conditions

Replies: 1

Last updated: 15 April 2021

ZOE Covid Symptom Study -video updates
by alexmcpee (Apr 15)

Tim is a voice of reason I have watched many of his Videos. Sandy did you watch his conversation about Vitamin D? Seesm he is not a fan of it. Shame we cant get all doctors on the same page. One

by sandy craine (Mar 6)

Professor Tim Spector, lead investigator on the ZOE COVID Symptom Study, gives an update on the latest case numbers, but warns not to get too hung up on the increasingly stubborn incidence rate
Category: Other conditions

Replies: 1

Last updated: 15 April 2021
ShawnJ on 24 March 2021

Category: Blood tests

Replies: 4

Last updated: 14 April 2021

PCR Increase
by ShawnJ (Apr 14)

All,
I am happy to say my latest PCR result is .007. My doctor was really happy with the result and we have decided to try an alternating 20/40 mg of Sprycel. We also discussed my last result which

by ShawnJ (Mar 26)

Thank you for the replies.
Mamodei, I have read a large number of your post and we seem to be fighting similar battles. I have dealt with many of the same side effects. It has been discouraging to

by mamodei (Mar 25)

When I went from Sprycel 50 to Sprycel 20 my BCR/ABL when from 0.0243 to 0.0793 in a couple months. My doctors were not concerned, and my numbers dropped for the next test, and now after a

by Tricky109 (Mar 25)

Hi
Increases or blips as some call them are common not nice at all but can be normal. There is a fantastic facebook group chronic myeloid leukemia uk lots of chats and sharing of experiences it
Category: Blood tests

Replies: 4

Last updated: 14 April 2021
sandy craine on 3 April 2021

Category: Drug-drug interactions

Replies: 5

Last updated: 13 April 2021

iCMLF webinar: Update on COVID-19 vaccines and CML - April 7th 13.30 CET
by Christine R (Apr 13)

Thank you.
I have just had a reply from the iCMLf and they advised that it will available from next week so I will keep on looking.

by sandy craine (Apr 10)

Yes it's quite a challenge to find the relevant links on the iCMLf website... however, try this one https://www.cml-foundation.org/covid-19-hub.html
Sandy

by Christine R (Apr 8)

If anyone can find it on the iCMLf website i would be grateful for a link or a point in the right direction. May just not be there yet.
I should have just taken the GMT time to be the time for

by chrissie (Apr 8)

I logged in at 12.30pm here in he UK and watched it. Very interesting and it has put my mind at rest as both speakers " thought" CMLers would get protection from the vaccines despite our
Category: Drug-drug interactions

Replies: 5

Last updated: 13 April 2021
sandy craine on 12 April 2021

Category: Other conditions

Replies: 3

Last updated: 13 April 2021

Vitamin D Regulates Immune Cells and the Immune Response
by scuba (Apr 13)

https://chicagocrusader.com/high-vitamin-d-levels-may-protect-against-co...

by Sunny (Apr 12)

Thank you so much Sandy.
Pigeon.

by Karinne (Apr 12)

Great article. So glad for this website!!

by sandy craine (Apr 12)

Vitamin D plays a crucial role in regulating immune system activity – both innate and adaptive responses. The innate immune system is responsible for the initial defensive front with a central
Category: Other conditions

Replies: 3

Last updated: 13 April 2021