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SS86 on 15 January 2022

Category: Organising your life

Replies: 4

Last updated: 23 January 2022

Sudden cold sweats
by SS86 (Jan 23)

Thanks, John. We have recently done a complete blood count and nothing seems off. Sweating is not in the night but usually in the day, at times twice a day or at times thrice in the day.
There

by johnw1001 (Jan 17)

CRP is a protein made by the liver so it might be an idea to check your liver function scores perhaps.As Sandy said it might indicate some form of infection and also that your immune levels are not

by SS86 (Jan 17)

Thanks Sandy.

by sandy craine (Jan 16)

Hi, it sounds like you are worried about her C-reactive protein level. This may indicate some kind of inflammation, so I would suggest you do contact her Haematologist just incase dasatinib -even at
Category: Organising your life

Replies: 4

Last updated: 23 January 2022
Blarn on 22 December 2021

Category: Organising your life

Replies: 1

Last updated: 20 January 2022

Moving to another country and TKI treatments
by EvaH (Jan 20)

Ive moved around a lot since diagnosis. So i keep my own copy of med records and track myself as well as Letting the docs do it.
For your questions, it Very much depends where you are moving to!

by Blarn (Dec 22)

For those of you who have moved to another country with CML or know someone who has - what was your experience like? Did your new health insurance cover TKIs fully, partially or not at all? Was the
Category: Organising your life

Replies: 1

Last updated: 20 January 2022
scuba on 19 January 2022

Category: Uncategorised

Replies: 0

Last updated: 19 January 2022

Covid Risk Assessment
by scuba (Jan 19)

https://qcovid.org/

QCovid® risk calculator
QCovid® is a clinical decision tool intended to support conversations between clinically trained professionals and patients about COVID-19 risk
Category: Uncategorised

Replies: 0

Last updated: 19 January 2022
mil on 9 January 2022

Category: Uncategorised

Replies: 2

Last updated: 18 January 2022

Chamomile and Imatinib
by EvaH (Jan 18)

Ive taken clonazapam and imatanib with no issue
Anxiety can do funny things to your brain proceeses, especially if you're having it bad enough to cause racing heart.
Take the clonazapam you'll feel

by An (Jan 9)

Just check with your oncology team if it is an issue,chamomile tea I don't think will cause issues,but just run it by your onc then there will be no doubts.

Anxiety affects lot of ppl,nothing

by mil (Jan 9)

Hi guys,
I am sorry to write this, i am so ashamed to share this, but … i just broke up with my girlfriend and i am not feeling so well… It had been a long week for me, and i
Category: Uncategorised

Replies: 2

Last updated: 18 January 2022
bendicco on 16 January 2022

Category: Uncategorised

Replies: 3

Last updated: 17 January 2022

Visiting grandkids
by scuba (Jan 17)

https://www.lifesitenews.com/news/studies-show-vaccinated-people-more-li...
https://dailyreckoning.com/are-vaccines-making-covid-worse/
https://ijvtpr.com/index.php/IJVTPR/article/view/23/51
https

by bendicco (Jan 17)

Thanks for your response. I probably don’t take enough of the vitamins you mention, I take a multiple every day. Would you direct me to the data you mention? Thank you!

by scuba (Jan 17)

What is your blood vitamin D level?
Do you take vitamin C, zinc, quercetin regularly? (and in sufficient dose)
CML, for you, not an issue. It's not detectable.
There is data supporting vaccines

by bendicco (Jan 16)

I am a 67 year old woman with CML numbers not detectable, have had THREE FULL vaccines, safe to visit unvaccinated grandkids?
Category: Uncategorised

Replies: 3

Last updated: 17 January 2022
Riggered on 16 August 2019

Category: Blood tests

Replies: 19

Last updated: 13 January 2022

Fish Oil and Dasatinib
by johnw1001 (Jan 13)

Hi All,
May I just update on other benefits of taking high grade Omega 3 fish oils.It is coming up for 16 years on imatinib now and I have always suffered eyelid irritation (blepharitis) and the

by Abe1969 (Jan 13)

It means that DHA makes imatinib better at killing pH positive leukemia. Also it lets the normal pathway that tells normal cells it's time to die work on leukemia cells. These are good things.

by Abe1969 (Jan 13)

It means that DHA makes imatinib better at killing pH positive leukemia. Also it lets the normal pathway that tells normal cells it's time to die work on leukemia cells. These are good things.

by JohnFromChicago (Mar 4)

Hi Sarah,
I started taking fish oil (EPA-800, DHA-400) to attempt to naturally lower my BP a few months ago since then my PCR went form .01 to .07. (I have been bouncing between .01 and .04 for
Category: Blood tests

Replies: 19

Last updated: 13 January 2022
scuba on 7 January 2022

Category: Uncategorised

Replies: 3

Last updated: 11 January 2022

For those who take Curcumin (turmeric)
by Nimbus2 (Jan 11)

Thank you for your warning. I do take 3 * 500 mg a day. My iron for the first time ever was low and out of range. I wonder whether I should rethink my approach.

by scuba (Jan 8)

I would separate taking Curcumin with food that has fat only (avocado, cheese, nuts) and separate by 6 hours from food rich in iron (green leaves e.g. spinnach), beef, etc. Curcumin metabolizes

by Christine R (Jan 8)

Thanks Scuba. I will look at what meals i take the tablets with. I take them according to the instructions on the bottle and that is to take with food twice a day. I don't take high

by scuba (Jan 7)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6414192/
Iron Deficiency Anemia Due to High-dose Turmeric
Turmeric, the natural source of curcumin, is under intense investigation as an anti-
Category: Uncategorised

Replies: 3

Last updated: 11 January 2022
nicolem on 9 January 2022

Category: Blood tests

Replies: 5

Last updated: 10 January 2022

BCR results trending in the wrong direction
by David Fitz (Jan 10)

Great - that means it’s international standard, which makes it simple to compare to treatment goals.
Without that there can be a bit of extra maths required.
David

by nicolem (Jan 9)

Hi David,
I just double checked (we are in the US if that changes anything) and next to her results it does say "BCR-ABL1/ABL1 (% IS)" which I assume stands for International Scale? I

by David Fitz (Jan 9)

Purely anecdotal - but there was a poll on a Facebook group recently about PCR numbers following vaccinations and there didn’t seem to be any reason to think the vaccinations affected results

by nicolem (Jan 9)

Hi David,
Thanks so much for your reply! I do believe she is adhering to her medication, although I know I can't be certain as I don't live with her. But she is very focused on keeping the
Category: Blood tests

Replies: 5

Last updated: 10 January 2022
Nana Simone on 16 September 2018

Category: Side effects

Replies: 21

Last updated: 9 January 2022

CML & Depression
by (Jan 9)

It's unfortunate...I hope you will be able to end your depression soon. For a long time, I was depressed because of my helplessness. When I was a child, a girl was raped in front of my eyes. I

by chrissie (Oct 22)

Hi Nana
As well as meditation what about trying Tai Chi or Yoga? I found Tai Chi kept me sane on diagnosis 9+ years ago - and I still attend my class. It's therapeutic effects are well known in the

by EvaH (Oct 18)

Just to say that I agree meditation can help and if you are in the uk and resources are few, vipassana meditation offers donation based residential courses in meditation, although you must comit to

by Nana Simone (Sep 19)

Hi Dawn,
Thank you for your input, it’s reassuring to hear other people’s truth whether we have differences or not.
From what I gather it seems I need to find the right support, but it’s
Category: Side effects

Replies: 21

Last updated: 9 January 2022
Alan Locke on 9 January 2022

Category: Drug-drug interactions

Replies: 0

Last updated: 9 January 2022

Chimeric Antigen Receptor T-Cell Therapy
by Alan Locke (Jan 9)

Hi everyone,
Hope 2022 brings hope and joy!
I was fascinated by a BBC news report on CART therapy. They generalised that this therapy is for Leukaemia.
Have any members of the forum
Category: Drug-drug interactions

Replies: 0

Last updated: 9 January 2022
Myra on 31 December 2021

Category: Children & young people

Replies: 6

Last updated: 8 January 2022

PCR result
by Myra (Jan 8)

Hi Buzz,

My son had very good response with Dastanib in the first pcr test. The first 3 months value was just 1 percent then next one was 0.4 and then 0.14. He was in college and was not

by Buzzm1 (Jan 8)

Myra, when you have time please post your son's CML history showing test dates and results. I try to fully document case histories for future reference. After being in a low level

by Buzzm1 (Jan 4)

Knowing that 0.142 presents no real danger from the CML, I would be hesitant to switch to another TKI unless it was at a much lower dosage, i.e. Sprycel 50mg. All TKIs have side -effects.

by Myra (Jan 4)

The doc wants to wait for the next test and if it doesn't go down she will try another tki.

He doesn't follow healthy diet and I think that maybe the reason or maybe resistance to this.
Category: Children & young people

Replies: 6

Last updated: 8 January 2022
Ryn on 13 October 2021

Category: Blood tests

Replies: 14

Last updated: 8 January 2022

Starting TFR after 5 years on Dasatinib/4.4 years DMR
by Vikram (Jan 8)

Why younger people not successful in TFR?
Any reason?

Ya only mith??
Younger people immunity better than old people right?
What's reason??
After December to continue off drug (no dose) (000

by Ryn (Jan 1)

Thank you for the advice! I think I'll regain undetected fairly quick. When I was first diagnosed I was at 50.5 and got down to less than .0032 in about 9 months after starting 100mg sprycel. I

by Ryn (Jan 1)

Thank you, Scuba! Definitely going to talk to my doctor about a lower dose.

by Ryn (Jan 1)

Ng/ml. Thank you for the resource!
Category: Blood tests

Replies: 14

Last updated: 8 January 2022
MANNI OBEROI on 6 January 2022

Category: Blood tests

Replies: 0

Last updated: 6 January 2022

Eosinophils increase
by MANNI OBEROI (Jan 6)

Eosinophils is 10 percent....is ther is any problem or not
Category: Blood tests

Replies: 0

Last updated: 6 January 2022
Rick B on 4 January 2022

Category: Uncategorised

Replies: 5

Last updated: 5 January 2022

CML & Omicron
by Rick B (Jan 5)

Sandy,
Thank you. Very informative.
Rick

by sandy craine (Jan 5)

Hi Rick,
Congratulations on your 50th wedding anniversary. For data on the omicron variant, I can only point you to the well researched and communicated Youtube videos from Dr John Campell ... for

by Rick B (Jan 5)

Alastair,
Thank you, and I am glad your COVID Omicron symptoms were no big deal. And congratulations on reaching undectable again. I hope to join you there soon!
I got mixed messages yesterday from

by AlastairC (Jan 5)

Hi Rick, I think I have one datapoint for you - me.
I am on 200mg Imatinib currently. I failed TFR after 17 months in October 2020, went back to 400mg imatinb, and regained 0.000% BCR-ABL in a few
Category: Uncategorised

Replies: 5

Last updated: 5 January 2022
HelenS on 31 December 2021

Category: Uncategorised

Replies: 9

Last updated: 4 January 2022

4th dose Covid vaccination
by Christine R (Jan 4)

Actually I did the same and was amazed how they now seem to know about 3rd primary and Boosters. Just showed the letter and was asked what my condition was. He typed it in and waived me

by Roza (Jan 4)

Hi, I went into a walk-in centre today along with a letter from my consultant and just had to tick a few boxes on a paper form which they will update later on the system. Very straightforward and

by HelenS (Dec 31)

Christine. Chaos it is. But I think the good thing is that walk in centres are all about getting jabs in arms and that is what I planned to do come the New year...take my NHS vulnerable letter(s)

by Christine R (Dec 31)

I think the main problem in the UK is the nhs website says we are eligible for a 4th but cannot book online or via 119. The only option is via a GP or to go to a walk in centre with proof we are
Category: Uncategorised

Replies: 9

Last updated: 4 January 2022
RC Kirk on 10 May 2018

Category: Uncategorised

Replies: 5

Last updated: 3 January 2022

Is there a way to flag a thread as spam?
by David Fitz (Jan 3)

Thanks Sandy,
There was a second barrage this morning unfortunately. All swiftly gone though!
David.

by sandy craine (Jan 3)

I think David may be away, but I logged on yesterday I spent some time manually deleting that spam attack! We will try to get on top of this in the New Year, we have a few things to sort out with

by RC Kirk (Jan 3)

Thanks for taking the trash out this morning before it had time to get too stinky!

by RC Kirk (May 11)

Very good! David, thanks for doing the "weeding" so we don't get lost in the spam weeds.
Kirk
Category: Uncategorised

Replies: 5

Last updated: 3 January 2022
rebeccacrosby on 15 December 2021

Category: Side effects

Replies: 7

Last updated: 2 January 2022

Tasigna/elevated liver enzymes
by rebeccacrosby (Jan 2)

Thank you. I found it very helpful to read your posts about dose reduction before I asked my dr.

by Buzzm1 (Dec 31)

Rebecca, when it comes to lessening side-effects, nothing even comes close to reducing dosage. Almost all CML patients do fine on reduced dosage so not to worry. Keep any remaining 150

by rebeccacrosby (Dec 30)

Thank you for your reply. I am encouraged by your success at only 200mg. My doctor reduced my dosage to 400mg and that has made all the difference. I feel good and my liver enzymes and

by Zaccar (Dec 30)

Hi,
Also on tasigna for a year now. I have the same issue. I'm at 1.4, my pharmacist called me alarmed by the fluctuations. Mind you my doctor hasn't even brushed the subject .I didn
Category: Side effects

Replies: 7

Last updated: 2 January 2022
mil on 15 December 2021

Category: Uncategorised

Replies: 22

Last updated: 1 January 2022

Booster dose, pfizer covid
by Buzzm1 (Jan 1)

Alastair, don't let that stop you from further lowering your dosage to 100mg. It will further lessen, if not eliminate, any lingering side-effects.

by AlastairC (Dec 31)

Hi Buzz, imatinib dose reduction does not correlate with improved WBC for me. I have known I was neutropenic for over 35 years, and that has probably been the case for longer than that,

by Buzzm1 (Dec 29)

Alastair, with regards to your neutropenia, a lower Imatinib dosage would benefit you. I'm willing to wager that Imatinib 50mg/day will keep you undetected, that's after first lowering

by AlastairC (Dec 28)

Scuba, yes BCR-ABL undetected but WBC around 1.8, Neutrophils 0.8 on a good day. My neutropenia was identified in the late 1980s and was made slightly worse by imatinib since CML Dx 2007. I've
Category: Uncategorised

Replies: 22

Last updated: 1 January 2022
Skeltonn on 20 February 2019

Category: Treating CML

Replies: 3

Last updated: 31 December 2021

Sprycel and weight gain
by Myra (Dec 31)

My son gained weight in the last few months. He is on Dastanib from a year now. But not sure is it from the medicine or his eating habits.

by Chuckster (Feb 25)

No. Just the opposite.
I have experienced weight- loss of approx 20 lbs: From 195 lbs to around 175 lbs.
From Feb 2018 to Feb 2019
Holding around 175 lbs for the last 3 months.
Had to stop the 100mg

by Bill Miller (Feb 21)

Yes and yes. I had terrible fatigue on 140mg. I also waxed and waned between diarrhea and constipation, which amplified the fatigue. And I was only on at that dose for 3.5 weeks. I did also gain

by Skeltonn (Feb 21)

Thank you for the reply. I have gained about 30 pounds in the last 12 months. I am 12 months from first being diagnosed and still trying to navigate this disease.
Category: Treating CML

Replies: 3

Last updated: 31 December 2021
ssss on 29 December 2021

Category: Children & young people

Replies: 8

Last updated: 31 December 2021

Plateau in results: update
by Buzzm1 (Dec 31)

Roza, those are a few of my own observations over the last five years.
Two things I quickly noticed about plateaus at low CML levels:
1. they seemed impervious to gradual dosage reduction or

by Roza (Dec 31)

Hi Buzz,
Are you aware of any study or data that supports evidence of a reduction in the IS ratio after a plateau ?
If there is good scientific evidence of this then it be would be helpful in making

by kat73 (Dec 31)

It is not true that you can't go back to imatinib after switching to dasatinib. Also wanted to add to my other reply that I've been on 20 mg dasatinib for about 4 years.

by Buzzm1 (Dec 31)

ssss, I had a reason.for asking you to post your son's test dates and results.
After a CML patient has either been undetected, or plateaued, at levels below 1.0, for a year, or so, it is
Category: Children & young people

Replies: 8

Last updated: 31 December 2021