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johnw1001 on 18 June 2020

Category: Organising your life

Replies: 4

Last updated: 21 June 2020

Organ donation and CML
by Sunny (Jun 21)

Thank you for that helpful link, David.
Sunny.

by Nimbus2 (Jun 19)

I did take medical advice on this point being very keen that my body should be useful after my death. With CML, we cannot donate blood and we cannot donate our organs for transplant. We can donate

by David Fitz (Jun 19)

Hi John,
Opting out is as simple as using the NHS App and going to that section. I am sure you can do it through your GP as well, but this was was very simple.
From: https://www.organdonation.

by Felix (Jun 18)

Hi, I have already opted out ,I wouldn't want anyone to have any of my organs .I really don't think they would have them anyway .regards ,Denise.
Category: Organising your life

Replies: 4

Last updated: 21 June 2020
Barbs on 6 May 2017

Category: Uncategorised

Replies: 2

Last updated: 18 June 2020

Zavie's Zero Club
by David Wolovitz (Jun 18)

Hi to all CML Warriors:
I was diagnosed in 2000 and belive I was number 87 or 89 on the list. Made it after 6 months on Gleevec, started the day it was approved. Happy Memories!!!
I am

by Richard42 (May 9)

I was a member - can't recall the number though. I was "inducted" either late 2009 or early 2010.

by Barbs (May 6)

Hello - we're trying to piece together Zavie miller's Zero Club list. Please can you leave a comment if you were a member or know of someone who was?
Category: Uncategorised

Replies: 2

Last updated: 18 June 2020
nazarm4 on 18 June 2020

Category: Children & young people

Replies: 0

Last updated: 18 June 2020

Cml
by nazarm4 (Jun 18)

Hello every one .
always have your doctor check your blood for vitamin D level . It’s very important.
Category: Children & young people

Replies: 0

Last updated: 18 June 2020
nazarm4 on 18 June 2020

Category: Treating CML

Replies: 1

Last updated: 18 June 2020

Cml
by johnw1001 (Jun 18)

Your comment is of interest because iron intake through diet promotes healthy red blood cell development and especially maintains good levels of hemaglobin.Some have suggested that adequate iron

by nazarm4 (Jun 18)

Hello every one .have lots of side effects from
gleevec .
found a solution =eat lots food contains iron .
Category: Treating CML

Replies: 1

Last updated: 18 June 2020
patricia donlon on 8 June 2020

Category: About CML

Replies: 2

Last updated: 14 June 2020

Question please
by patricia donlon (Jun 14)

Thank you for your response. I have now had a blood test to detect if their is a mutation and if so my meds will be switched.

by scuba (Jun 9)

You should consider switching drugs - dasatinib is a good option.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4786836/
https://www.nature.com/articles/s41375-020-0805-1

E13A2 and E14A2 are the

by patricia donlon (Jun 8)

I was diagnosed last August. Have been taking Imatinab 400mg since.
March 4 2020 BCR/ABL1 results were : E13A2 (B2A2) was 0.4891-----E14A2 (B3A2) was 4.2755
April 30th
Category: About CML

Replies: 2

Last updated: 14 June 2020
cct121 on 12 June 2020

Category: Blood tests

Replies: 7

Last updated: 13 June 2020

Changes in Log results - Dasatinib
by cct121 (Jun 13)

Thanks Scuba,
From browsing through the forums, and other advices, I'm starting to take multivitamins, and then looking into finding a nutritionist who can help see what other deficiencies my

by scuba (Jun 12)

"Just for clarity, are the values of Log-reduction based on each individual patient's initial diagnosis?" Should be.
You are going to be fine. Stay aware and track. Listen to

by cct121 (Jun 12)

Understood, the next time I go see my oncologist I'll see if the lab that sends the results has these values written down (I'm sure they do). Since my diagnosis, all of the reports I've

by scuba (Jun 12)

PCR is typically reported as a percentage ..... PCR = 0.xx. If you are in MMR then your PCR would be below 0.1 %. Log reporting is always relative to starting PCR at diagnosis and is different for
Category: Blood tests

Replies: 7

Last updated: 13 June 2020
Ontasigna on 9 June 2020

Category: Side effects

Replies: 3

Last updated: 12 June 2020

jointwnd muscle pain : Nilotinib
by alexmcpee (Jun 12)

Ok cool. Yeah Green Tea is fine I drink it occasionally. Just avoid what the info leaflet says ie Grapefruit.
Alex

by Ontasigna (Jun 12)

Hi Alex
Its been 18 months now! Btw is it ok to drink Green tea when on Nilotnib?

by alexmcpee (Jun 9)

How long have you been on Tasigna and what/when was your last PCR? The symptoms you are experiencing are common of all TKI. I am on Tasigna and I have tender joints sometimes but no pain as such. I

by Ontasigna (Jun 9)

Hi all,
i have bad joint and muscle pain since couple of days. its more after taking the nilotinib(mornings and evenings).
also, I am feeling very weak and fatigued. Its almost the same pain i
Category: Side effects

Replies: 3

Last updated: 12 June 2020
Benji on 11 June 2020

Category: Children & young people

Replies: 3

Last updated: 12 June 2020

Dasatinib and BCR tests.
by David Fitz (Jun 12)

Here's a really interesting study around acid needed to break down dasatinbib.
https://sci-hub.tw/https://journals.sagepub.com/doi/full/10.1177/1078155...
It basically says that where there is a

by Benji (Jun 11)

Thanks for the reply. I was hoping you would step in. Im on my phone so please excuse the grammar.

We had invested in Alkaline water only for him and we didn't realize his stomach needed to be

by David Fitz (Jun 11)

Hi Ben,
Welcome!
I'm just wondering why he avoids food before / after taking his pills. It's nilotinib, not dasatinib, that requires a fasting period. Or is there something with paediatric

by Benji (Jun 11)

Hello.
My name is Ben, and Im writing aboit my son Benji. He is 11. He was diagnosed in 2016 with CML + PH, ALL. As you can imagine this is very rare. So Ive enjoyed reading on this forum for
Category: Children & young people

Replies: 3

Last updated: 12 June 2020
andre82 on 11 June 2020

Category: Treating CML

Replies: 2

Last updated: 11 June 2020

Setback with imatinib, now on Nilotinib
by ColoradoGuy (Jun 11)

I would look into Dasatinib instead as Nilotinib approaches the disease very similarly as Imatinib. It may require being on the phone for a while and possibly arguing with your oncologist but

by alexmcpee (Jun 11)

Hi Andre,
I does take time to adjust. Your cbc looks good now you have switched to Nilotinib. Like you I had high platelets at diagnosis 900 or something and wbc of 330. All have been normal for the

by andre82 (Jun 11)

Hi guys.
Hope you all are doing well!
I was diagnosed this February.
At diagnosis, BCR / ABL was 44.3 and WBC was 94
After 1 month of 400mg imatinib BCR / ABL was 25, WBC 2,14 , but Plt
Category: Treating CML

Replies: 2

Last updated: 11 June 2020
Tedro on 5 June 2020

Category: Treating CML

Replies: 8

Last updated: 9 June 2020

Stopping Sprycel
by Tedro (Jun 9)

Sorry about the link. I guess I coulda selected just a few.

I'd like to ask: If this is what my largest organ(?) the Skin looks like (not unbearable), what do my insides look like? and,

by Tedro (Jun 9)

Thank you ALL very very much.
I had not realized there were replies until a recent email notice.
Again, thank you!
I have read at least one paper talking about Dasatinib as treatment for

by Tedro (Jun 9)

Hi,
Thank you, very much.
Best Regards!

by Tedro (Jun 9)

Hi,
Thank you, very much.
Best Regards!
Category: Treating CML

Replies: 8

Last updated: 9 June 2020
patricia donlon on 8 June 2020

Category: Blood tests

Replies: 0

Last updated: 8 June 2020

Question please
by patricia donlon (Jun 8)

I was diagnosed last August. Have been taking Imatinab 400mg since.
March 4 2020 BCR/ABL1 results were : E13A2 (B2A2) was 0.4891-----E14A2 (B3A2) was 4.2755
April 30th
Category: Blood tests

Replies: 0

Last updated: 8 June 2020
Sally-bear on 6 June 2020

Category: Side effects

Replies: 5

Last updated: 8 June 2020

Imatinib side-effect?
by Sally-bear (Jun 8)

My PCR is steady on 400mg - there was no dramatic change coming off 600mg, although oncologist was
cautious and put me onto 500 next, then down to 400. Occasionally have a 'blip' where

by Sally-bear (Jun 8)

I agree - but I think as long as your Oncologist is happy with blood-counts and BCR results, they are not
concerned about pain. Hope you get some joy from your Doc about the pain in your side!

by iffat (Jun 8)

Hello

I am on imatinib 4 years now,,at the begining i used to have some joints pain,it faded with time,

Btw it got worst when i took the generic imatinib(teva-imatinib), so i sticked to

by Tbrand (Jun 7)

Off topic, did it affect your pcr coming off 600? I’m on 600 for 5 years now and Doc said to try 400 starting next week, 6 weeks before my next test. I’ve been a steady.02.
Category: Side effects

Replies: 5

Last updated: 8 June 2020
Ontasigna on 6 June 2020

Category: Getting help

Replies: 2

Last updated: 7 June 2020

Nilotinib and Figs
by Karthikeyan (Jun 7)

Hello David,

Im taking nilotinib.they told me to avoid everything that tastes sour,which includes all citrus fruits, tamarind,mango etc.
Can i eat carissa carandas(extreme sour taste).

by David Fitz (Jun 6)

Sure is. The reason some fruits can’t be eaten is because of an enzyme called CYP3A4- and figs don’t appear to cause issues with that.

by Ontasigna (Jun 6)

Hi all,
Is it ok to eat figs (fruit) when on Nilotinib.
Category: Getting help

Replies: 2

Last updated: 7 June 2020
vvk on 3 March 2017

Category: Organising your life

Replies: 6

Last updated: 6 June 2020

Is my thinking correct to marry a girl with a similar condition (CML) like me .
by Busaboy (Jun 6)

"Cmlonly.com" ?
Somebody buy the domain. You're welcome.
Not a bad idea though. Certainly a lot of understanding and common ground I would think n

by Karthikeyan (Jun 4)

Did you find someone.

by vvk (Apr 2)

Thanks EvaH for your suggestions .

by EvaH (Mar 9)

My thinking is that AS it has a good life expentancy, I dont consider it a lie to explain the condition while steering clear of the term leukemia. Often people want a name and dont really care that
Category: Organising your life

Replies: 6

Last updated: 6 June 2020
EvaH on 4 June 2020

Category: Treating CML

Replies: 0

Last updated: 4 June 2020

Reminder: Order your meds in good time
by EvaH (Jun 4)

Hi all,
Covid19's main impact for CML folk would appear to be in disrupted supply chains and distracted staff in the supply chain.
I started to try to get more imatanib over 10 days ago, a
Category: Treating CML

Replies: 0

Last updated: 4 June 2020
Chuckster on 3 June 2020

Category: Blood tests

Replies: 7

Last updated: 3 June 2020

Latest Blood Test Results: May28, 2020
by scuba (Jun 3)

This is what I take and not specific to CML patients. I wish I had known about the importance of these prior to CML and had been taking them. At diagnosis my vitamin D level was 17 ng/ml):
1.

by scuba (Jun 3)

If I am not eating foods rich in zinc (Oysters), I just take a daily supplement from time to time (15 mg). Women need less than men. No specific brand, just reputable. I tend to take zinc every day

by Karthikeyan (Jun 3)

Hello scuba, what are the supplements cml patients should take other than vitamin d3.

by Felix (Jun 3)

Hi Scuba, just going to add Zinc to my other vits ,how much do you recommend please ,thank you , Denise.
Category: Blood tests

Replies: 7

Last updated: 3 June 2020
Christine R on 24 May 2020

Category: Uncategorised

Replies: 17

Last updated: 3 June 2020

covid 19 threat to cml patients real or hypohtetical?
by Felix (Jun 3)

Hi Scuba, I for one thank you so much for all the information and support you have given me.You gave me the courage to stand up to my Doctor regarding my dosage of Dasatinib and actually pass

by scuba (Jun 3)

Additional information on Covid-19 and CML (from American Society of Hematology)

https://www.hematology.org/covid-19/covid-19-and-cml

COVID-19 and CML: Frequently Asked Questions updated 21 May
(

by Kenny (Jun 3)

I now very rarely visit this forum and instead mostly go to mcmillan cancer support or cancer research uk now as I find having dangerous unproven theories about covid 19 and how it affects people

by kali (Jun 2)

I appreciate the posts that Scuba puts on here. The information has given me the ability to look into some of the ideas he posts. That provides the wonderful option of learning and researching the
Category: Uncategorised

Replies: 17

Last updated: 3 June 2020
Sd on 31 May 2020

Category: Side effects

Replies: 8

Last updated: 3 June 2020

cramps and diarrhea
by Sd (Jun 3)

I will do that. I think right now it is just trying to avoid abrupt changes in diet.

by Alaina (Jun 3)

No problem, SD. If things get better with your gut, please share your nutrition regimen as I would like to hear what has worked well for you.

by Sd (Jun 1)

That is a good point, Alaina. Since the spring/summer here, I have been eating more fresh veggies from our garden (chard, lettuce) and some purchased corn. This is definitely more fiber than I

by Alaina (Jun 1)

Hlo SD. I was told by a nutritionist that TKIs are known for GI upset and causing sensitivity when there was none prior to starting medication. Only suggestion I have is to look at your diet. Maybe
Category: Side effects

Replies: 8

Last updated: 3 June 2020
Beulaparthiban on 2 June 2020

Category: Uncategorised

Replies: 1

Last updated: 2 June 2020

CML and marriage
by Karthikeyan (Jun 2)

Hello beulaparthiban,i think you should be from south of india.There is no forum or websites for cml patients for matchmaking in india.my suggestion is,talk to your oncologist.He might suggest

by Beulaparthiban (Jun 2)

Is there any forum to find a life partner who is with CML for CML?
Category: Uncategorised

Replies: 1

Last updated: 2 June 2020
Aeje10327 on 31 May 2020

Category: Uncategorised

Replies: 1

Last updated: 31 May 2020

Lab Question
by AlastairC (May 31)

Don't understand the bit about lab updating. However statistically the difference between one reading of 0.03% and the next of 0.04% is not significant. If it trends up again next time I'd

by Aeje10327 (May 31)

Hi Everyone,
My doctor let me know last week that my 9 month PCR was undetectable. I was obviously thrilled until the final report was uploaded and it read .044. I messaged him and he said
Category: Uncategorised

Replies: 1

Last updated: 31 May 2020