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gdesposito on 25 February 2023

Category: Uncategorised

Replies: 1

Last updated: 28 February 2023

Ponatinib/Iclusig side effects
by ColoradoGuy (Feb 28)

There have been others of us who did not get under 0.1 quickly. I believe BDMemphis, Ipmaki, Alex, and myself to name a few. I believe we were all in our late 30's or early 40's when diagnosed.

by gdesposito (Feb 25)

Good morning,
Hope everyone is well. I was recently started on Ponatinib 30mg daily on 2/13/22 and a few days ago the side effects are starting to creep in. Mostly joint pain and fatigue so far,
Category: Uncategorised

Replies: 1

Last updated: 28 February 2023
Dustylloyd on 14 February 2023

Category: Uncategorised

Replies: 16

Last updated: 26 February 2023

Diabetes
by Dustylloyd (Feb 26)

Hi Alex,
I’m now very concerned about the Nilotinib advised dosage, and side effects, on a lot of occasions my liver condition as been commented on in the 12 weeks phone call consultations, having

by alexmcpee (Feb 25)

Hi Pete,
Yeah I am not so sure I agree with your doctors analogy. 1 litre of water and 1 litre of whiskey will do two very different things. TKi and especially Nilotinib is highly toxic. (My months

by Dustylloyd (Feb 23)

Hi scuba,
Absolutely brilliant, and helpful information as always from you, you’ve helped me tremendously and have given me a direction to which I must approach this latest “hurdle” in life,

by scuba (Feb 23)

Type 2 diabetes is a metabolic condition. Drugs (including TKI's) can exacerbate the condition, but TKI's alone are unlikely to be the sole cause.
In simple terms, the liver and the pancreas get
Category: Uncategorised

Replies: 16

Last updated: 26 February 2023
Sd on 9 January 2020

Category: Side effects

Replies: 4

Last updated: 26 February 2023

dry mouth
by Sd (Feb 26)

I use biotene rinse in the morning and at night. Also use biotene drops to suck on several times during the day. That might help you

by alexmcpee (Feb 25)

Ah man never had it before starting TKI and I wake up every morning with Gandhis flip flop. Dry as a bloody desert. So dry I put the TKi in my mouth and it sticks to the roof of my mouth. Bleeding

by Sd (Jan 10)

Hi David,
Thanks for the suggestion about O'Keefe's. I will see if I can find it here.

by David Fitz (Jan 10)

Hi,
Dry mouth is a recognised side effect of imatinb.
I'm not sure what I can recommend over something like aquaphor. I've always found diprobase very effective on dry skin, even if it
Category: Side effects

Replies: 4

Last updated: 26 February 2023
suvankardas on 21 February 2023

Category: Organising your life

Replies: 7

Last updated: 26 February 2023

Imatiniv and normal life
by suvankardas (Feb 26)

https://www.facebook.com/suva.rock

by alexmcpee (Feb 25)

Hey buddy, we can message each other via other comms send me a PM here on the site and I will be happy to give you my details. A problem shared is a problem halved and all that!

by suvankardas (Feb 23)

So kind of you Alex. I never thought I would be answered in such way in community. Can I connect you over Facebook or Instagram?

by suvankardas (Feb 23)

So satisfying to see a teacher in this group. I always thought to be alone with my kind of journey. Thank you Martin for being so elaborative. Hoping help from you in future. Can I connect with you
Category: Organising your life

Replies: 7

Last updated: 26 February 2023
Vikram on 17 February 2023

Category: Uncategorised

Replies: 2

Last updated: 25 February 2023

PLATELET COUNT
by alexmcpee (Feb 25)

In normal range. Just relax you’re doing great.

by hannibellemo (Feb 25)

It's still well within normal range.

by Vikram (Feb 17)

CBC
EDTA WHOLE BLOOD
HEMOGLOBIN (HB). 15.6. [ 13.0-17.0]
(RBC) COUNT. 5.73 high [4.5 -5.5]
WHITE BLOOD CELL (WBC) 7.4 [4.0-10.0]
PLATELET COUNT. 401 [150-410]
RBC AND PLATELET 45.4. [40.0-50.
Category: Uncategorised

Replies: 2

Last updated: 25 February 2023
acspeakman on 31 January 2023

Category: Side effects

Replies: 11

Last updated: 25 February 2023

Bosutinib
by alexmcpee (Feb 25)

Hello, TKi causes quite a bit of havoc with the gut and a lot of havoc with energy levels. I can relate to all the comments. Although I don’t get tummy ache in the traditional sense my whole abdomen

by acspeakman (Feb 25)

Thanks very much for your response, Pat. That is another really interesting option. I think my physician will probably keep me on Bosutinib, because it worked so well so fast. Also she was among

by hannibellemo (Feb 25)

You have another option open to you - instead of dealing with side effects that may make your life quality less than desirable, you could switch to a different TKI. I've done that 3 times in the

by acspeakman (Feb 10)

Hello, thank you for your response. 19 years is a really long time. It's helpful to know you have those kind of high and low days--regarding exhaustion and lack of energy--also. That's what
Category: Side effects

Replies: 11

Last updated: 25 February 2023
POPPY on 25 February 2023

Category: Side effects

Replies: 1

Last updated: 25 February 2023

Hip Pain, Swelling & Redness on Bum
by David Fitz (Feb 25)

Hi Poppy,
That is not the sort of side effect that is typical with any CML drugs. It’s often hard to separate problems we have that are due to to CML / or the medication from just the sort of thing

by POPPY (Feb 25)

Hi All, my partner has been on Dasatinib 70mg for 2 years now.
His readings are good, however yesterday he had sudden pain on his left hip that swelled up and was red. His left bum too was red and
Category: Side effects

Replies: 1

Last updated: 25 February 2023
rebeccacrosby on 20 February 2023

Category: Treating CML

Replies: 6

Last updated: 24 February 2023

Blast phase with AML
by rebeccacrosby (Feb 24)

Thank you for sharing about your experience with your transplant. My doctor told me it is my best chance so I am going for it. I have a 17yr old son I want to see graduate from high school and go to

by sandy craine (Feb 22)

Hello Becca,
Again, let me say I am sorry you have to deal with both CML and AML .... that is a pretty rare diagnosis and it must be hard for you.
I will share my experience of transplant.

I

by rebeccacrosby (Feb 22)

Hi Sandy,

Thank you for your response. I was diagnosed with both CML and AML. I am being treated in Boise, Idaho in the United States. They are testing my siblings now, or at least have sent

by sandy craine (Feb 21)

Hi Rebecca,

I am sorry you are having to deal with this turn of events. Has your clinician told you your have AML as a second leukaemia, as well as Ph+CML? Or did he/she mean that your CML has
Category: Treating CML

Replies: 6

Last updated: 24 February 2023
israel on 2 January 2023

Category: Uncategorised

Replies: 5

Last updated: 23 February 2023

What I learned 8 years post diagnosis.
by Costas (Feb 23)

Loved it! Enjoy and have as much fun as you can.😊

by hannibellemo (Jan 7)

@israel, now that's what I call a "happy dance"! Cheers to 2nd chances!

by Dustylloyd (Jan 6)

Spot on Isreal!

by alexmcpee (Jan 4)

Haha good for you. We should all be dancing at a 2nd chance at life 😀
Category: Uncategorised

Replies: 5

Last updated: 23 February 2023
suvankardas on 16 February 2023

Category: Side effects

Replies: 2

Last updated: 22 February 2023

Blurry vision
by alexmcpee (Feb 22)

Every ailment I have experienced has been since commencing TKI including occasionally blurry vision. No reason or rhyme does it when it feels like it along with other symptoms.

by Buzzm1 (Feb 17)

suvankardas, it's a wait and see.
Hopefully the dosage reduction has reduced, or eliminated, your side-effects.
Buzz

by suvankardas (Feb 16)

Now it’s almost 3months since I started Imatiniv 400. New symptom like blurry vision and joint pain. Is it common with you guys or it’s only me who has to go through such side effects?
Category: Side effects

Replies: 2

Last updated: 22 February 2023
Yurii on 20 February 2023

Category: Treating CML

Replies: 7

Last updated: 21 February 2023

Transplantation in CML
by alexmcpee (Feb 21)

Hi thereZ In the UK as a citizen this treatment is all free, not sure how it works for non citizens, but in my mind citizens of plant earth deserve the same treatment. It’s about time these

by ColoradoGuy (Feb 20)

Well it is insurance through your employer usually. Not all employers offer this benefit. The insurance company can't screen you to deny service based on pre-existing conditions.

by Yurii (Feb 20)

Is it possible to switch to this insurance plan if you are already sick?

by ColoradoGuy (Feb 20)

I get medical coverage through my employer in the USA and I believe those over 65 have to pay about $5,000 out of pocket or something like that before medicaid kicks in. An online pharmacy
Category: Treating CML

Replies: 7

Last updated: 21 February 2023
johnw1001 on 20 February 2023

Category: Uncategorised

Replies: 0

Last updated: 20 February 2023

Amazon Smile programme ends-no more support to charities
by johnw1001 (Feb 20)

Just a note to say that Amazon have decided to discontinue as from today, February 20 2023, support to specific charities based on individual spend by those who have nominated a particular cause -
Category: Uncategorised

Replies: 0

Last updated: 20 February 2023
Alien69 on 18 February 2023

Category: Side effects

Replies: 0

Last updated: 18 February 2023

Genetic Risk of Prediabetes and Diabetes Development in Chronic Myeloid Leukemia Patients Treated With Nilotinib
by Alien69 (Feb 18)

See Genetic Risk of Prediabetes and Diabetes Development in Chronic Myeloid Leukemia Patients Treated With Nilotinib
Category: Side effects

Replies: 0

Last updated: 18 February 2023
StayStrong3916 on 9 February 2023

Category: Uncategorised

Replies: 12

Last updated: 14 February 2023

Question for Scuba Re:D3
by StayStrong3916 (Feb 14)

Mods, if this post is offensive, please remove and send me an email of reprimand.
To Scuba's point, I 100% agree. There really is no one single magic bullet in the prevention of or remission of

by scuba (Feb 14)

Interestingly - Dr. Garland passed away from esophageal cancer (2010). He probably was taking vitamin D supplements and measuring his vitamin D blood level prior to his diagnosis given his research

by StayStrong3916 (Feb 13)

As stated in an earlier post, I could not make the audio in that particular video work.
So I decided to watch several of Dr Garland's lectures on youtube.
I found one which I believe many will

by StayStrong3916 (Feb 13)

Will look into it. Thanks very much!
Category: Uncategorised

Replies: 12

Last updated: 14 February 2023
RC Kirk on 19 January 2023

Category: Treating CML

Replies: 10

Last updated: 23 February 2023

Asciminib - Latest update updated
by Sunny (Feb 10)

Thank you David and Nimbus.
Wow, 27 videos, a lot to watch and to learn. I was really happily surprised to see our own Prof Apperley again; haven't seen her for ages, since we started telephone

by David Fitz (Feb 7)

You can see the videos of the sessions here:
https://www.cmladvocates.net/cml-horizons-2022-hybrid-conference/
It was a great conference this year. Lots to learn.

by Sunny (Feb 7)

Thank you, Nimbus. Looking forward to viewing them.
pigeon

by Nimbus2 (Feb 7)

From the Horizon video, I understand that Asciminib works on a different "pocket" to the other TKIs. Dasatinib is the most broad based inhibitor that acts on many kinases whereas Asciminib
Category: Treating CML

Replies: 10

Last updated: 23 February 2023
Kathyp on 4 February 2021

Category: Uncategorised

Replies: 10

Last updated: 9 February 2023

Claiming benefits
by Gwyneth (Feb 9)

You can certainly apply for PIP. If you can, get someone to help you to fill in the forms (I recommend Citizens Advice). Extreme fatigue can cause you to be unable to dress easily, to have

by chrissie (Feb 10)

Hi Cathy
I am a Benefits adviser for Citizens Advice and to clear your mind as to whether you should apply or not if you google
citizens advice PIP descriptors
you

by sarahrose (Feb 6)

Where are you from? Have you had a transplant? If you have had a BMT in the US you automatically qualify for disability payments. CML is very hard to get disability for. However, you could attempt

by Kathyp (Feb 6)

Thank you all for replying , I don’t think I’ll put myself through the stress of applying x
Category: Uncategorised

Replies: 10

Last updated: 9 February 2023
igennem on 8 February 2023

Category: Drug-food interactions

Replies: 3

Last updated: 9 February 2023

green tea question aagain
by scuba (Feb 9)

You are correct on nilotinib (which is similar in structure to imatinib). I mis-typed.

by igennem (Feb 9)

Yeah thanks a lot, that makes sense :D
But actually what I see is that elimination half time of nilotinib is also 15-17 hours.

by scuba (Feb 9)

Green tea has polyphenols, primarily epicatechin and epicatechin gallate which can decrease the effectiveness of TKI's such as nilotinib (Tasigna).
But it is important to note that green tea

by igennem (Feb 8)

Hi All,

I see this question came up already a couple of times but I couldn't really come to a conclusion.
Is the green tea decreasing effects of the TKIs especially tasigna?
Category: Drug-food interactions

Replies: 3

Last updated: 9 February 2023
Alien69 on 24 January 2023

Category: Treating CML

Replies: 4

Last updated: 7 February 2023

Is it a good idea to change bosutinib to asciminib?
by Alien69 (Feb 7)

Thank you for your information. A patient told me that the pleural effusion decreased with asciminib without completely disappearing.

by kat73 (Feb 6)

I have somewhat the same profile as you, and yes, I would jump at the chance to switch to asciminib. I maintain MR4 to MR4.5 on just 20 mg dasatinib, but have minimal residual pleural fluid

by Alien69 (Jan 27)

My results were very good with all the TKIs - I became PCRU with all of them. I lost PCRU with imatinib due to the mutation. On the strength of this good performance, I am trying to stop bosutinib

by Buzzm1 (Jan 24)

What have your test results shown over the last nineteen years and what dosage of each TKI were you on at that time?
Category: Treating CML

Replies: 4

Last updated: 7 February 2023
rambler on 11 August 2022

Category: Blood tests

Replies: 10

Last updated: 6 February 2023

Low platelets, low WBC. First post
by rambler (Feb 6)

Hello Sandy,
Thanks for your message.
As you probably remember, I had a hospital appointment with the doctor today. Had a blood test first. Then to the doctor.
We were told from the blood test that

by sandy craine (Feb 4)

Hi Paul, You should definitely ask detailed questions of your doctor. I have been treated at Imperial College Hammersmith since my diagnosis in 1999. I eventually showed resistance to imatinib in

by rambler (Jan 30)

Hello Sandy,
Many thanks for writing
I didn’t know I had too much to worry about until you mentioned ASXL1 could be complicating matters. Hmmm. Now I have googled the gene it doesn’t

by sandy craine (Jan 30)

Hi Paul,
Re: ASXL1 gene.
From what I have read and understand (very little) ASXL1 is a tumour suppressor gene. It certainly complicates the picture. As you live in London, I assume/hope you are
Category: Blood tests

Replies: 10

Last updated: 6 February 2023
suvankardas on 1 February 2023

Category: Side effects

Replies: 7

Last updated: 6 February 2023

Serious bone pain on imatiniv
by Nimbus2 (Feb 6)

My cramps and bone pain stopped the very day that I changed from imatinib to dasatinib.

To a lesser degree, I have suffered from cramp all of my life. That has also stopped dead.

Also

by Vikram (Feb 2)

3-4 month leg pain go
Normal...body adjust imtinib...
I m on imtinib last 14-15 year no leg pain..
side effects...in my case
Hair fall. (600 to 400 dose discrease only this side effects hair fall

by johnw1001 (Feb 2)

I had this during the first six to twelve months of taking imatinib but then it subsided .As one of my doctors said to me this is normal as imatinib is doing its job by changing the composition of

by suvankardas (Feb 2)

I didn’t take my medicine yesterday. As per doctor’s suggestion I won’t take it for 2 more days . My doctor in Chennai, India is reluctant to stop imatiniv. Hope the pain goes away
Category: Side effects

Replies: 7

Last updated: 6 February 2023