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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
klpietrz on 14 April 2020

Category: Uncategorised

Replies: 2

Last updated: 17 April 2020

Covid-19
by scuba (Apr 17)

https://www.bloomberg.com/news/articles/2020-04-16/coronavirus-news-dogs...
The Plan for Dogs to Hunt Out the Coronavirus
Labradors and spaniels can sniff out malaria in humans, and scientists say

by alexmcpee (Apr 15)

Hi there,
Sorry to hear you’ve joined the CML club, but rest assured the vast majority live normal lives with meds.
I am on Nilotinib and I was told by a CML expert that having CML does not

by klpietrz (Apr 14)

Good Afternoon, I was just diagnosed late January. I am taking Tasigna. I will be going back to work on May 1st, as an Assistant Manger at Walmart. Some of the stories that I have been hearing have
Category: Uncategorised

Replies: 2

Last updated: 17 April 2020
Haneesha on 13 April 2020

Category: Treating CML

Replies: 3

Last updated: 15 April 2020

What does Dasatinib taste like?
by David Fitz (Apr 15)

I’ve never noticed any taste at all. Completely neutral.

david.

by Haneesha (Apr 15)

Thankyou Martin. Appreciate the help.
I hope you get better soon! :)

by MartinZA (Apr 15)

Hi there
I went the opposite way- changed from dasatinib to imatinib almost two years ago. From what I remember, the Sprycel tablets I had had very little taste... they were certainly not sweet

by Haneesha (Apr 13)

Hi All,
I was wondering if anyone using Dasatinib (Bristol-Myers Squibb) on this forum has tasted the medicine?
I got switched from Gleevac to dasatinib recently and I cant help but wonder why
Category: Treating CML

Replies: 3

Last updated: 15 April 2020
Dustylloyd on 15 April 2020

Category: Uncategorised

Replies: 5

Last updated: 15 April 2020

Expert opinion
by Dustylloyd (Apr 15)

Many thanks to Alex, Skuba and John for helpful knowledgeable replies to my sceptic thoughts, I probably need to introduce half full instead of half empty into my outlook on Cml.
again many thanks.

by johnw1001 (Apr 15)

Hi ,
I think that most of us are aware that if we are in major molecular remission then we have a good chance of a normal life span-of course we might meet drug resistance and new mutations on the

by scuba (Apr 15)

I have some thoughts based on experience regarding patients with CML and Covid-19. This is my opinion and so read it with that in mind. It does guide what I do personally.
CML and Covid-19 is

by Dustylloyd (Apr 15)

Hi Alex, many thanks for your reply, I probably read into things to deeply, My thinking is if you have any problem to do with your health, and it means taking medication daily for 52 weeks a year
Category: Uncategorised

Replies: 5

Last updated: 15 April 2020
sandy craine on 3 April 2020

Category: Other conditions

Replies: 10

Last updated: 14 April 2020

COUNTER-COVID Study: clinical trial using imatinib in COVID-19 patients- Netherlands
by teddyb (Apr 14)

Found this older study.
From what little i could take away from this, both dasatinib and imatinib seems to have some effect on Mers-Cov and Sars-Cov.
Nothing on covid19 though, but interesting, as i

by sandy craine (Apr 9)

Some pertinent and very interesting information from an individual member of one of the facebook groups that I follow.
Someone contacted Brian Druker MD and asked him about the Counter-COVID

by teddyb (Apr 8)

Thank you Sandy.
I have asked for my results, but will not get them until next week because of Easter, i am nevertheless continuing to take the supplements while waiting for my levels :)

by scuba (Apr 8)

Sandy is absolutely correct. Vitamin D normal range is set by statistical sampling of a reference population and observations made related to preventing rickets.
Any level below 20 ng/ml Rickets
Category: Other conditions

Replies: 10

Last updated: 14 April 2020
israel on 12 April 2020

Category: Uncategorised

Replies: 3

Last updated: 14 April 2020

Is Covid-19 a blood disease?
by israel (Apr 14)

Hope these links enrich the debate and spark your interest in realizing how a solution can arise by looking at things from a different angle.
Regarding TKIs and the hypothesis, I personally didn't

by sandy craine (Apr 14)

Hi Israel and Thomas,
Please be careful when you share links like this.... If you go through the comments on the 'letsrun' forum - the second link you provided - you will see this following

by thomas.c (Apr 14)

Hi Israel,
Thanks for sharing this, very interesting. I'm wondering if this changes the opinion on the safety of TKIs. Dasatinib is known to decrease red blood cells, which as the article says

by israel (Apr 12)

Hi,
I was recommended an article that talks about Covid-19 being more of a blood disease than a respiratory one. The article has been taken down (Medium) but here's a link:
https://archive.is/
Category: Uncategorised

Replies: 3

Last updated: 14 April 2020
snowman 35 on 12 April 2020

Category: Drug-food interactions

Replies: 8

Last updated: 14 April 2020

Natural curcumin or supplement?
by snowman 35 (Apr 14)

Excactly! I drive my bike with 260 km/h I served in special forces I ve jumped from helicopters but this is something I can t control... I do my best although to get over it with small steps!

by scuba (Apr 14)

I have had been taking C3 complex Curcumin:
https://www.sabinsa.com/newsroom/sabinsa-products-faq/curcumin-c3-comple...
It is sold under several brand names (Sabinsa license). Much of the research

by Aeje10327 (Apr 14)

Out of curiosity Scuba, is there a particular brand of curcumin that you use? I am feeling overwhelmed by the number of options.

by scuba (Apr 13)

I understand. I have an irrational fear of heights - as when walking across a hanging wood bridge in Costa Rica's rain forest suspended 2000 feet in the air while your family is urging you to
Category: Drug-food interactions

Replies: 8

Last updated: 14 April 2020
sandy craine on 20 March 2020

Category: About CML

Replies: 41

Last updated: 14 April 2020

COVID-19 - NCRI Recommendations for CML patients receiving TKI therapy
by Claire. (Apr 14)

Hi, I’m new here, as a poster, although I’ve been checking out this forum for the last three years since my partner got diagnosed, and we attended the patient day in Birmingham a couple

by chrissie (Apr 12)

H David
Pleased it's all sorted now. The procedure you describe I have been using with my haem since about 2015. H@H are incredibly efficient. This time I was due a blood test last Monday at the

by sandy craine (Apr 10)

Hi Alastair,
Same here. You may be right about those of us in TFR, but we still have a diagnosis of a disease that is included on NHS England list - Leukaemia - and surely we must be included

by AlastairC (Apr 9)

So a week after NHS Wales said the letters were in the post I have yet to receive one. Possible reasons?
1) I am in TFR, and have been for 18 months so life expectancy is the same as the
Category: About CML

Replies: 41

Last updated: 14 April 2020
Karinne on 10 April 2020

Category: Uncategorised

Replies: 11

Last updated: 13 April 2020

pcr after 18 months TFR
by Gian P (Apr 13)

Hi Everyone!
in response to Changing the dosage as you get close to 0%.
I was diagnosed in July 2018, and since then i change few TKI meds, finally my platelets set for Sprycel 50 mmg. I am now

by scuba (Apr 11)

Sandy - good clarification. I did mean those who are already in the DMR group and of those, 50% remain DMR and the others lose remission.
Interestingly, I did try to go off drug when my PCR was

by Karinne (Apr 11)

Thanks Sandy to remind me how “lucky” I am to be able to try TFR because I first achieved below MMR.

by sandy craine (Apr 11)

Hi Karinne and Scuba,
"There is something about you (and the other 50% who succeed at TFR)" j
So people do not get the impression that 50% means 1/2 of the entire population of CML
Category: Uncategorised

Replies: 11

Last updated: 13 April 2020
snowman 35 on 1 April 2020

Category: Treating CML

Replies: 10

Last updated: 12 April 2020

Should I Try TFR now ?
by hannibellemo (Apr 12)

Great information from Prof. Clark. Thank you for posting this.

by kali (Apr 2)

Thank you for this link. Great update!

by snowman 35 (Apr 2)

Ok Alaistai C I will see it!! Thanks!

by AlastairC (Apr 2)

This link is a video of a talk by Prof Richard Clark at the UK patient day last September. It may provide some useful information for your discussions with your doctor.
Category: Treating CML

Replies: 10

Last updated: 12 April 2020
Nimbus2 on 21 February 2020

Category: Uncategorised

Replies: 1

Last updated: 12 April 2020

Dasatinib by the kilogram
by johnw1001 (Apr 12)

Hi Nimbus,
Dasatinib is made by Bristol Myers Squib and I did read that its expiry in USA is set for October 2025 and the reasoning from the FDA was that having been introduced in 2006 the drug

by Nimbus2 (Feb 21)

I discovered during my googling that some people are buying dasatinib via the Chinese site, Alibaba. Sellers there are providing dasatinib in powder form looking like icing sugar. Surely, this is a
Category: Uncategorised

Replies: 1

Last updated: 12 April 2020
Nimbus2 on 9 March 2020

Category: Uncategorised

Replies: 5

Last updated: 12 April 2020

Dizziness not vertigo
by Nimbus2 (Apr 12)

Thank you for your description this is helpful.
My GP upon investigation noted the following:
Coded entry O/E - gait normal (2991.)
Coded entry O/E - no nystagmus (2BN1.)
Subsequently, my

by thomas.c (Apr 12)

Lots of dizziness unfortunately. I have been taking 100mg dasatinib for 2 years, i switched to 70mg about a month ago but no change in side effects yet. Heat waves like i'm feverish all the time

by Felix (Mar 9)

Hi, I refused to go on 100 mg ,just because my Doc who isn't a specialist said it was the norm ,research shows now that it too toxic and can cause all sorts of problems .So I started on 50

by Nimbus2 (Mar 9)

Thank you, Denise. This is helpful. My B12 is normal, but still your experience indicates that the dizziness may go away. For now, I am to remain on 100 mg. If I respond adequately then my dosage
Category: Uncategorised

Replies: 5

Last updated: 12 April 2020
alexmcpee on 10 April 2020

Category: Uncategorised

Replies: 6

Last updated: 11 April 2020

Alcohol and drinking a little more than a “few”
by alexmcpee (Apr 11)

Thanks mate that’s what I thought. Everything in moderation as they say!
Alex

by alexmcpee (Apr 11)

Thanks David,
I was almost MMR at 18months @0.118% back in October, I have bloods taken on Monday which will be my 24 month PCR and hopefully I’ll be officially MMR.
Little anxious about going

by alexmcpee (Apr 11)

Hi John,
Yes I am on Nilotinib so will make sure I don’t drink during my fast.
And glad to know that it doesn’t appear to reduce uptake of our drugs.
All the best
Alex

by David Fitz (Apr 10)

Besides the nilotinib fasting, there's really no particular issue other than general health to consider.
I am certainly guilty of having more than might be recommended - I think at the moment a
Category: Uncategorised

Replies: 6

Last updated: 11 April 2020
cousineg2 on 11 April 2020

Category: Treating CML

Replies: -1

Last updated: 11 April 2020

Hematopoietic stem cell transplantation using single UM171-expanded cord blood

Category: Treating CML

Replies: -1

Last updated: 11 April 2020
Ontasigna on 11 December 2019

Category: Treating CML

Replies: 17

Last updated: 9 April 2020

High WBC - cml progressing??
by Tricky109 (Apr 9)

Hi Brett can I ask how you are getting on now with lymphocytes?

by Tricky109 (Feb 21)

Brett can i ask please how you are getting on now? Im in exact same position.

by Ontasigna (Dec 18)

Hi Korila,
Yes, My first CBC showed TLC - 16000.
I had to get CBC again at NABL accredaited lab to be sure on the count. That's when I got 11.53 with abs lym count : 3.54 dated 12 Dec
On 17th Dec I

by Brett0503 (Dec 17)

I’m in the same boat with my lymphocytes increased to 6.78 when I had bloodwork last week with wbc count of 12.8
my next bloodwork is on monday 12/23.
I read online that Dasatinib induces
Category: Treating CML

Replies: 17

Last updated: 9 April 2020