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ckquinn on 1 February 2022

Category: Treating CML

Replies: 3

Last updated: 1 February 2022

TFR Fail
by Buzzm1 (Feb 1)

ckquinn, be your own best advocate; since your CML is at a very low level and you had successfully maintained undetected over a long period of time on 50mg, there is no logical reason why you

by ckquinn (Feb 1)

Much appreciated, thanks for this, my preference would certainly 50mg, but will see what she says.

by AlastairC (Feb 1)

I failed TFR 2 years ago. I had reduced my imatinib from 400mg to 200 mg for a year, and then stopped. I stayed in TFR for 17 months and them went over 0.1% BCR-ABL. I wanted to restart on 200mg but

by ckquinn (Feb 1)

After much soul searching and research I decided to try and go treatment free, almost 7yrs since diagnosis it had to be worth it.
However after 4 moths I'm no longer in MMR, I have an appointment
Category: Treating CML

Replies: 3

Last updated: 1 February 2022
S Davis on 1 February 2022

Category: Treating CML

Replies: 0

Last updated: 1 February 2022

Sprycel and management of pleural effusion
by S Davis (Feb 1)

I have been on Sprycel 80 mg for about 2.5 years now for CML and have responded well.
Last fall I developed a persistent cough and shortness of breath with exertion. I went to urgent care and was
Category: Treating CML

Replies: 0

Last updated: 1 February 2022
Taper11 on 31 January 2022

Category: Side effects

Replies: 3

Last updated: 1 February 2022

Dasatinib Side Effect Timing
by scuba (Feb 1)

100 mg dasatinib is now considered a high dose and the old standard. Depending on where your bcr-abl level is currently, you could lower your dose to 50 mg and potentially achieve a better result.

by Taper11 (Jan 31)

Thanks Scuba. I'm taking 100mg.

My WBC was 320k at diagnosis in August/21, blasts ~9%.
My last CBC was the end of November. The hematologist walked in the room and said "Well, you're boring".

by scuba (Jan 31)

What is your dose?
When was your last complete blood count (CBC) taken?
Early in treatment, your blood system is going through a dramatic transition from leukemic back to normal. Often with TKI'

by Taper11 (Jan 31)

I've been on dasatinib for ~5 months and have been pretty much side effect free the whole time.
For the last four to five days I've had pretty much constant mild nausea and fatigue, nothing
Category: Side effects

Replies: 3

Last updated: 1 February 2022
sandy craine on 31 January 2022

Category: Other conditions

Replies: 1

Last updated: 1 February 2022

UK patients needed for "MyeloidScan" study – Long COVID in patients with myeloid blood cancers
by David Fitz (Feb 1)

I am participating in this study. It's pretty straightforward from a patient perspective, and by participating you are helping drive the science of CML and COVID forward.
If you have any

by sandy craine (Jan 31)

Another chance to opt in to this study.
UK patients needed for "MyeloidScan" study – Long COVID in patients with myeloid blood cancers | CML Support
Category: Other conditions

Replies: 1

Last updated: 1 February 2022
LouiseS on 14 April 2018

Category: Uncategorised

Replies: 5

Last updated: 31 January 2022

Muscle pain treatment
by Angelbane78 (Jan 31)

I'll tell you more, if a person has health problems and is employed, it is not a fact that the employer is not afraid to pay. My husband injured his shoulder ligaments when he was on duty (he is

by Tielsen (Jan 31)

Maybe you should get a doctor's consultation as magnesia is not as good as it sounds

by mylesduffy (Nov 16)

I think that massage should help in your case. It is better to use the services of a professional masseur. Quality massage is always easy, good feeling, psychological and physical satisfaction, and

by LouiseS (Apr 15)

Thank you so much Sandy. The curcumin has really helped his puffy eyes so hopefully the magnesium will do as great a job with the muscle pain.
Category: Uncategorised

Replies: 5

Last updated: 31 January 2022
scuba on 11 January 2022

Category: Uncategorised

Replies: 6

Last updated: 30 January 2022

Why some get very sick from Covid and others do not ... in fact, most do not.
by Gian P (Jan 30)

Thank you, I appreciate your input, i will work on my Vitamin D, but right now my sugar levels are more of a priority and I understand that Vitamin D my lower even more Glucose levels, so i was

by scuba (Jan 30)

Your vitamin D level is indeed too low for healthy virus protection. I took 10,000 IU's per day every day for three weeks to double my level. Hopefully it can do the same for you. I also take

by Gian P (Jan 29)

Thank you for the useful information, my Vit D is 34 G and my Glucose is down to 54, so all my levels feels a bit off... i will try rightaway with 7500 Vit D. Unless there is anything else i should

by Mick E (Jan 23)

Scuba
thanks for all the useful info you keep posting!!👍🏻
Category: Uncategorised

Replies: 6

Last updated: 30 January 2022
Alaina on 1 July 2020

Category: Uncategorised

Replies: 10

Last updated: 30 January 2022

Sprycel
by S Davis (Jan 30)

Thank you Kat73 and Felix for your comments and suggestions about pursuing low dose Sprycel intervention. You give me more confidence about addressing the option with my oncologist.
I have

by kat73 (Jan 30)

I agree with Felix. However, even at 20 mg the effusions can persist. After stopping Sprycel completely, sometimes the effusions don't go away completely anyway. Everybody is

by Felix (Jan 29)

Hi Susan ,I would push for 20 mg Sprycel first rather than changing to Imatinib if you have no other side effects now .Imatinib is so much worse than Sprycel for side effects I know from experience

by S Davis (Jan 29)

Thank you for sharing this information.
I have had chronic CML for 2.5 years and was put on Sprycel 80 mg. I have done well on Sprycel and was at "not detected" IS% >5 at
Category: Uncategorised

Replies: 10

Last updated: 30 January 2022
vonnie on 18 January 2022

Category: Uncategorised

Replies: 11

Last updated: 29 January 2022

cramp
by EvaH (Jan 29)

Side note: my calcium levels were completely bonkers for a couple of years after dx (they were high)

by Mick E (Jan 23)

Hello Vonnie
I managed to reduce the severe cramp initially by taking magnesium but more important for me it was the inclusion of lots more cruciferous greens and not consuming high GI foods and

by vonnie (Jan 20)

Hi to all of you that replied to my post going to have a chat with chemist and see which they recommend
so lots of thanks to you all
Vonnie

by EvaH (Jan 20)

Definitely doesn't matter. Citrate and oxidate versions tend to less expensive and can cause digestive issues. Start on the cheaper ones first...why not?
Chelated magnesium tends to be glycinate,and
Category: Uncategorised

Replies: 11

Last updated: 29 January 2022
sandy craine on 30 December 2021

Category: Food & fitness

Replies: 1

Last updated: 25 January 2022

Dr John Campbell's reassuring Video re: Vit D + and boosting immunity
by sandy craine (Jan 25)

Good news on 'Natural Immunity' from John Campbell.
video 1 Natural immunity as protective as vaccine induced immunity
video 2 A lesson in Immunology with Professor Robert

by sandy craine (Dec 30)

This video is for educational purposes only and must not replace advice from your own health care provider. Always consult your own doctor before taking any medication or supplements. It is not
Category: Food & fitness

Replies: 1

Last updated: 25 January 2022
Felix on 23 January 2022

Category: Blood tests

Replies: 2

Last updated: 24 January 2022

TFR timing
by Felix (Jan 24)

Hello Buzz ,thank you for taking the time to reply to me with excellent advice ,very much appreciated ,Kind Regards ,Denise.

by Buzzm1 (Jan 24)

Denise, gradually reducing your dose from Dasatinib 20mg to 10mg would likely be better for you; i.e., skipping every fourth day would effectively average 15mg/day, before skipping every other day

by Felix (Jan 23)

Hello, hope you are all ok .I am 64 , and two months into my fifth year of having CML and I have been undetected for 2 years 3 months .I am currently on 20 mg Dasatinib,and have been for about
Category: Blood tests

Replies: 2

Last updated: 24 January 2022
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
ckquinn on 31 August 2020

Category: Side effects

Replies: 3

Last updated: 29 September 2022

Breaking teeth
by scuba (Jan 12)

Vitamin D3 + vitamin K2 = teeth strength like steel.

https://alivenhealthy.com/2021/03/02/vitamin-d3-and-k2-how-to-reminerali...

by saseder (Jan 12)

Maybe you lack some vitamins? Calcium?

by Nimbus2 (Aug 31)

I initially adhered to the mantra "you cannot blame imatinib for all of your ills". However, having recently changed from imatinib to dasatinib, I can see that imatinib was responsible for

by ckquinn (Aug 31)

Would be interested to know if anyone has had problems with their teeth while taking TKI'S, as time goes on I find bits break off mine and naturally need repaired, is this a side effect of CML/
Category: Side effects

Replies: 3

Last updated: 29 September 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