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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
Damian Gabilondo on 12 April 2021

Category: Uncategorised

Replies: 2

Last updated: 12 April 2021

Doubts about the quality of samples and copies BCR ABL
by Damian Gabilondo (Apr 12)

Thanks for the answer, the laboratory gives its results in IS, but the striking thing is that whenever a lower quantity of copies of BCR - ABL was counted, the results showed increases, and I think

by AlastairC (Apr 12)

Statistically there is no different between your last two test results. The test uncertainty at these very low levels is as large as this variation. It would be useful to confirm that these results

by Damian Gabilondo (Apr 12)

Hello, can someone help me? My last PCR result is RM 4.0% 0.0041 coming from RM 4.5, I have my doubts about the Laboratories and the quality of the sample, since the last result is 4.0 with 60,500
Category: Uncategorised

Replies: 2

Last updated: 12 April 2021
Chca3977 on 11 April 2021

Category: Treating CML

Replies: 5

Last updated: 12 April 2021

Has anybody had a stem cell transplant to help cure CML?
by sandy craine (Apr 12)

I hope his GVHD is not having too much of an impact on his quality of life. He was obviously in a difficult place - Blastic transformation - so I am not surprised they went for full transplant. Even

by sandy craine (Apr 12)

Hi Scuba,
Yes...my PCR tests show BCR-Abl % at 0.0002% and sometimes 0.0001%. My haematologist (Prof. Jane Apperley) just views these results as negative- or as you sometimes refer to this kind of

by Chca3977 (Apr 11)

Hi,

thanks for the reply. So good to hear your now cured and the BCR - ABL undetectable. My boyfriend was diagnosed at the ‘blast’ stage with Full Intensity Haplo transplant 9/10

by scuba (Apr 11)

HI Sandy,
I was curious your statement, "... virtually undetectable"?
Do you still have 'detection' occurring?
Category: Treating CML

Replies: 5

Last updated: 12 April 2021
Ontasigna on 10 April 2021

Category: Treating CML

Replies: 3

Last updated: 11 April 2021

Bcr abl slightly increased
by alexmcpee (Apr 11)

No difference at all. On paper yes in reality no. As far as I understand anything under 0.01% is inconsequential.

by Ontasigna (Apr 11)

Thank you sandy.

by sandy craine (Apr 10)

Do not worry.... there is no significant difference in these results. Sandy

by Ontasigna (Apr 10)

Hi all,
My bcr abl is slightly increased from 0.0014 to 0.0029
Bit worried. Kindly suggest
Category: Treating CML

Replies: 3

Last updated: 11 April 2021
mamodei on 29 October 2019

Category: Side effects

Replies: 11

Last updated: 10 April 2021

Retaining/regaining fitness on dasatinib
by Poppert (Apr 10)

I have the exact same problem. Just walking the stairs at home gives me a heavy breath. I can’t even run 300m without having to walk. I’m 47 and used to be reasonably fit before cml.
I

by mamodei (Nov 28)

I've been working on Jeff's suggestion of maintaining the distance but staying slow. It felt like I was getting nowhere as every time I started to run, even slowly, my breathing could

by Rosiem (Nov 9)

Keep up the good work! I've had to accept that I may never get back to the level of fitness I had before being diagnosed. Before I was diagnosed I suffered all the problems associated with low

by Mick E (Nov 6)

If you plan to run it’s important to keep the legs strong enough for the activity. Walking does very little to maintain the strength needed. Simple things like full range squats,
Category: Side effects

Replies: 11

Last updated: 10 April 2021
Rick B on 26 March 2021

Category: Uncategorised

Replies: 8

Last updated: 10 April 2021

Started TFR
by Rick B (Apr 10)

Thanks for all your support and well wishes. Here is a brief update for those who are interested in TFR:
This is my 16th day without taking 400 mg Imatinib. I cannot believe how well I feel.

by VickyK. (Apr 2)

Good luck!! All the best!

by israel (Mar 31)

Good Luck and have fun in the process

by Lisalater35 (Mar 29)

Good luck....
Category: Uncategorised

Replies: 8

Last updated: 10 April 2021
lgm555 on 31 January 2020

Category: Blood tests

Replies: 15

Last updated: 8 April 2021

One year on Imatinib, not at MMR.
by lgm555 (Apr 8)

Thanks for the suggestions everyone! I saw this thread get revived, but I wanted to wait for my telephone appointment with the oncologist before I posted.
Re-reading my post from before -- it

by scuba (Apr 8)

No doctor should ever recommend a transplant based on imatinib failure in 2021. There are many TKI's now available to try. In fact, several of these 2nd generation drugs are now prescribed first

by sandy craine (Apr 7)

I absolutely agree with others who have questioned your doctors 'attitude'. This is not in my personal experience of being treated by expert CML haematologists over 20 years.
To talk of

by Rae_B (Apr 7)

This really was such a great post - I really appreciate your perspective and I'm very grateful you took the time to write it. Thank you.
Category: Blood tests

Replies: 15

Last updated: 8 April 2021
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