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iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

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iCMLf Conversation- Treatment of CML patients after failure of 2 TKIs

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David Fitz on 12 October 2023

Category: Uncategorised

Replies: 15

Last updated: 20 November 2023

PinnedSandy Craine: Obituary
by israel (Nov 20)

Thank you Sandy for creating this platform and for making so much valuable knowledge available to people all over the world. The information in this forum changed many lives for the better.
I hope

by kat73 (Nov 10)

Oh, this is just such sad, sad news! Thank you, David, for posting. I can only reiterate what everyone else has said about the good that she did with this site for all of us. In fact, this very

by scuba (Nov 2)

I was so sad to learn of Sandy's passing. Sandy was an outstanding pioneer and helped so many people have hope in treating their CML. I had the pleasure to exchange private correspondence with her

by alexmcpee (Oct 27)

Oh my goodness David,
I am so sorry to hear of this. Sandy has been an incredible help on here and without this amazing forum I don’t think I’d be as strong as I am now.
I am really shocked to hear
Category: Uncategorised

Replies: 15

Last updated: 20 November 2023
David Fitz on 12 March 2022

Category: Uncategorised

Replies: 0

Last updated: 10 April 2022

Pinned“My CML” phone app now available
by David Fitz (Mar 12)

Following from what started as a masters students questionnaire about managing CML, to the thought that a phone app could help, with further research into what patients needed, and help from this
Category: Uncategorised

Replies: 0

Last updated: 10 April 2022
Loralie on 3 December 2023

Category: Reproductive health

Replies: 0

Last updated: 3 December 2023

Advice on use of interferon during pregnancy (any literature out there?)
by Loralie (Dec 3)

Hi all,
I am about to embark on a frozen embryo transfer in February after having frozen 5 embryos prior to starting Dasatinib 3 years ago. I have just reached a log 4.5 reduction for the first time
Category: Reproductive health

Replies: 0

Last updated: 3 December 2023
susannahclay on 7 November 2023

Category: Uncategorised

Replies: 8

Last updated: 3 December 2023

Just diagnosed today...anxious, scared, but hopeful?
by daniellaw (Dec 3)

Hi Susannah,
I hope after the initial shock of diagnosis, you are now feeling a little reassured that all will be OK.
I was diagnosed 21 years ago at the age of 34 when I was pregnant with my 2nd

by SageH (Dec 2)

Hi!
You are exactly where I was 2-1/2 years ago. Healthy, happy and going in for a routine blood test as part of my physical. No symptoms, no signs. My son was just finishing 6th grade. Nothing

by SageH (Dec 2)

Hi!
You are exactly where I was 2-1/2 years ago. Healthy, happy and going in for a routine blood test as part of my physical. No symptoms, no signs. My son was just finishing 6th grade. Nothing

by susannahclay (Nov 9)

Good advice all around. Thank you, Pojo.
Category: Uncategorised

Replies: 8

Last updated: 3 December 2023
Pojo on 26 November 2023

Category: Uncategorised

Replies: 3

Last updated: 28 November 2023

Silvio Berlusconi CML meds
by David Fitz (Nov 28)

Pojo, to be clear … CMML is not a “form” of CML, it just shares a similar sounding name. They are quite unrelated.
I want to be clear on this because we often have patients wondering if they are

by Pojo (Nov 27)

Yes I am familiar with this form. Thank you for the clarification David.

by David Fitz (Nov 27)

This was widely misreported. Berlusconi had Chronic Myelomonocytic Leukaemia, which is CMML not CML. Many news outlets described it as CML, not knowing any better.
CML and CMML are really quite

by Pojo (Nov 26)

I did a cursory search for Silvio Berlusconi today on google looking to find what drug he was taking for his CML. He died last June of a lung infection most likely due in part to his condition. I
Category: Uncategorised

Replies: 3

Last updated: 28 November 2023
Danmason11 on 8 November 2023

Category: Side effects

Replies: 2

Last updated: 25 November 2023

Imatinib side effects
by Smee (Nov 25)

I am a newcomer to the forum, in the UK having been diagnosed some months ago and on imatinib for only two months so I am still learning. I have the heavy eyes feeling that is common, my

by Pojo (Nov 9)

Dan sorry to hear of your side effects. I was on Imatinib for over ten years. In that time I did experience a myriad of problems. I did and still get slight palpitations. I had problems with my eyes

by Danmason11 (Nov 8)

Hi all
Having posted a few weeks ago about potentially changing TKI (which I haven’t) and in that post saying I hadn’t really suffered any side effects (just over 2 years since diagnosis) the last
Category: Side effects

Replies: 2

Last updated: 25 November 2023
WillO on 24 November 2023

Category: Treating CML

Replies: 1

Last updated: 24 November 2023

Nilotinib to Imatinib
by Pojo (Nov 24)

.

by WillO (Nov 24)

Hi. Anyone have any experience of changing from Nilotinib to Imatinib? I have a new care provider and this is my option. I have successfully been taking Nilotinib for the last 5 years. I have
Category: Treating CML

Replies: 1

Last updated: 24 November 2023
Pojo on 21 November 2023

Category: Side effects

Replies: 2

Last updated: 24 November 2023

Hypercholesterolemia with Tasigna
by Pojo (Nov 24)

Thanks WillO I will definitely look into that. I plan to see my PCP and consult with a pharmacist where I will relay this info. This is exactly the kind of input I was looking for. Much appreciated

by WillO (Nov 24)

Hi. I have been on Nilotinib for 5 years now and experience raised cholesterol. I made a number of dietary changes over an extended period and also tried fasting. Although I still do this it made

by Pojo (Nov 21)

Just received results from a lipid panel and it seems that all my cholesterol numbers have increased big time. I received similar results about 4 months ago from my annual health exam. I dismissed
Category: Side effects

Replies: 2

Last updated: 24 November 2023
Lucky Utubor on 24 November 2023

Category: Blood tests

Replies: 0

Last updated: 24 November 2023

High platelet and benign tumor growth
by Lucky Utubor (Nov 24)

Hi,
I have been experiencing high platelets for over a year now for this reasons my medications was changed from imatinib to dasatinib and I was placed on a 1000mg of hydroxyurea but so far the
Category: Blood tests

Replies: 0

Last updated: 24 November 2023
Taper11 on 17 October 2023

Category: Treating CML

Replies: 5

Last updated: 18 November 2023

When to switch to asciminib
by Taper11 (Nov 18)

Glad to hear that you are tolerating this one well! I didn't have any side effects with dasatinib or bosutinib, and the trend has continued for me with asciminib.

by healthyhabits (Nov 14)

Hi. I’m curious about side effects of bosutinib as I recently made the switch to Asciminib myself (after failing bosutinib and dasatinib).
I will tell you that the change is like night and day. It

by Taper11 (Oct 20)

Thanks for the kind insight Ian and David. To be honest I was ready to make the switch after the jump I had at 23 months.
I was holding out some hope that my results at 26 months would be back

by David Fitz (Oct 19)

You have a nice downwards trend, into MMR. That's your primary treatment goal which has been achieved. Congratulations!
I see no good reason to change medication from an efficacy point of view.
Category: Treating CML

Replies: 5

Last updated: 18 November 2023
alexmcpee on 4 November 2023

Category: Children & young people

Replies: 5

Last updated: 13 November 2023

Recent update and encouragements
by ColoradoGuy (Nov 13)

Alex - Glad to hear that you reached 0.01. As you know it helps a lot with the mental aspect for sure. I too had a lot of stress whenever something seemed off. Always thinking CML was progressing

by ColoradoGuy (Nov 13)

Alex - Glad to hear that you reached 0.01. As you know it helps a lot with the mental aspect for sure. I too had a lot of stress whenever something seemed off. Always thinking CML was progressing

by kat73 (Nov 10)

Alex, great post. I remember when you first appeared and you were always a terrific writer and showed such truly helpful empathy and insight for others' distress. You've been a big help to people

by Justine (Nov 5)

Thank you Al for a really important post. Congratulations on being so strong and taking care of yourself so well.
It is unsettling sometimes to have CML, though I must say, 6+years on I’m getting
Category: Children & young people

Replies: 5

Last updated: 13 November 2023
Alien69 on 8 November 2023

Category: About CML

Replies: 2

Last updated: 12 November 2023

Boosting immune system in chronic myeloid leukemia may lead to discontinuation of blood cancer drugs
by 3oK@ (Nov 12)

As a layperson, my understanding is that NK cells cannot make significant difference in cancers, but only repair/reactivation of P53 can. Specifically in CML, most people (90%+) do not have mutated

by Pojo (Nov 9)

Yes I read these articles. Here is another one that gives percentages by different blood components to predict TFR adherence, https://ashpublications.org/blood/article-abstract/doi/10.1182/blood.202

by Alien69 (Nov 8)

See these articles:

1 - https://medicalxpress.com/news/2023-11-boosting-immune-chronic-myeloid-l...

2 - https://www.nature.com/articles/s41375-023-02074-w
Category: About CML

Replies: 2

Last updated: 12 November 2023
MartinZA on 2 September 2023

Category: Treating CML

Replies: 15

Last updated: 10 November 2023

PCR rise after a year in TFR
by kat73 (Nov 10)

Martin, this is great news! And kind of a boost for me today, actually. After a July 0.009 put me perilously close to losing my precious second zero to the right, I dutifully waited for my regular

by Buzzm1 (Nov 7)

Martin, that's great news. In that you are very unlikely to lose MMR any time soon, see if your doctor will allow you to test again in three months. Testing monthly gets really old, really fast,

by AlastairC (Nov 7)

Martin, delighted for you. Enjoy the continuing break.

by MartinZA (Nov 7)

Well, as always all you kind folk on this site got it quite right! I've just had my call from my doctor and the BCR-Abl has declined from 0.01% back to 0.0067%, so this is great news for me. She
Category: Treating CML

Replies: 15

Last updated: 10 November 2023
DawnD on 8 November 2023

Category: Uncategorised

Replies: 2

Last updated: 8 November 2023

Stopping sprycel
by DawnD (Nov 8)

Thank you so much Alister I will check it out. Thank you!

by AlastairC (Nov 8)

Hi Dawn. You might find this talk by Prof Clarke from the patient day in 2019 useful - the title is "Reducing or stopping treatment - who and when?" Available on this website at https://cmlsupport.

by DawnD (Nov 8)

I have not been on in quite sometime. I was trying to find some advise on going off sprycel after 5 years of being undetected. I read the beautiful obituary on Sandy and was greatly saddened. Her
Category: Uncategorised

Replies: 2

Last updated: 8 November 2023
Loralie on 6 November 2023

Category: Drug-food interactions

Replies: 2

Last updated: 7 November 2023

Sprycel (Dasatinib) and Diazapam?
by hannibellemo (Nov 7)

Loralei, I was diagnosed 15 years ago and was prescribed low-dose alprazolam (Xanax) for anxiety. Since I seldom take any medication without checking with Dr. Google I read in several articles that

by David Fitz (Nov 7)

There is a theoretic concern that dasatinib could increase the availability of diazepam, but you must remember that the half-life of dasatinib is short at only 4 hours. So if you space them apart

by Loralie (Nov 6)

Hi everyone,
I was recently provided some Diazapam from my doctor to help me with an upcoming flight (I am a nervous flier and tend to panic). I checked for interactions with Sprycel and I get back
Category: Drug-food interactions

Replies: 2

Last updated: 7 November 2023
Alien69 on 7 November 2023

Category: Clinical trials

Replies: 0

Last updated: 7 November 2023

ThINKK (Therapeutic inducers of Natural Killer cell killing)
by Alien69 (Nov 7)

NK must be activated by immune sentinel cells in order to work as effectively as possible. However, these cells disappear after the transplant. While the presence of sentinel cells enhances the work
Category: Clinical trials

Replies: 0

Last updated: 7 November 2023
Micheala Russell on 31 October 2023

Category: Uncategorised

Replies: 7

Last updated: 6 November 2023

Newly diagnosed
by Micheala Russell (Nov 6)

Thank you very much for your reply.
Fortunately he was discharged from hospital on Thursday when his WBC reached 57 - the hydroxy worker very quickly considering!

Since returning home he has

by Micheala Russell (Nov 6)

Thank you very much for your reply.
Fortunately he was discharged from hospital on Thursday when his WBC reached 57 - the hydroxy worker very quickly considering!

Since returning home he has

by alexmcpee (Nov 4)

Bless you and your husband. I can sympathise with what you’re both going through at the moment.
Like your husband I was diagnosed nearly 6 years ago, wbc was 330,000 so not that far from your

by Micheala Russell (Nov 2)

Yes, we can’t quite believe how well he actually was consisting his blood work!
Thank you again, I will update once received.
Category: Uncategorised

Replies: 7

Last updated: 6 November 2023
Nazia on 8 October 2021

Category: Reproductive health

Replies: 4

Last updated: 4 November 2023

Headache with Imatinib
by Wstevenson (Nov 4)

Hello,

I used to (for many years) suffer from migraines several times a month. Since I was diagnosed with CML 5 months ago I cut out all sweets from my diet and started exercising 3-4 times a

by DaniellaRogers (Jan 31)

Thanks for the info. Btw, do you know any meds that can help me get rid of my migraines?

by Nazia (Oct 8)

Thnks. It will be helpful for me.

Regards

by Wendy Turner (Oct 8)

I drink 2 litres of water a day, and barely have a headache. Before I was diagnosed I used to suffer all the time with headaches but I think the water intake has made all the difference.
Category: Reproductive health

Replies: 4

Last updated: 4 November 2023
SS86 on 11 April 2023

Category: Side effects

Replies: 55

Last updated: 4 November 2023

Pleural Effusion Again ! Should we change from Dasatinib to Imatinib and BCR-ABL redecteded
by hannibellemo (Nov 4)

SS86, I had one period when I had been on nilotinib for 6 months where my bilirubin doubled and my ALT went up to 58 (almost doubled). My doctor wasn't concerned with one test result and it went

by Buzzm1 (Oct 22)

TKI induced bilirubin increase:

https://www.google.com/search?q=TKI+induced+bilirubin+increase&client=sa...

by SS86 (Oct 22)

Two months on Nilotinib 300 mg BD while has reduced the Bcr abl count to .019 but the recet blood test shows an increase in bilirubin.
Upon fibroscan it shows first stage of liver fibrosis.

by SS86 (Aug 5)

Thank you so much for sharing your journey and writing these assuring words. Means a lot to us. I hope we too have a good run on nilotonib.
I wish you all the best for your upcoming TFR.
Can
Category: Side effects

Replies: 55

Last updated: 4 November 2023
Santa on 23 October 2023

Category: Uncategorised

Replies: 12

Last updated: 2 November 2023

Do I need change in meds? From Imatinib to Tasigna
by Buzzm1 (Nov 2)

Santa, based on your lack of a post, I'm assuming that your doctor's appointment didn't go well. Not all doctors believe in dosage reduction and even fewer believe in dosage reduction unless their

by AlastairC (Oct 29)

It is a long time since I first got to undetectable; I think probably just under 2 years, having had a plateau at BCR ABL 0.6% for about 6 months, and suddenly boom!

by Santa (Oct 29)

Thank you for taking time to reply! You have all encouraged me to talk to my doctor about possible dose reduction. I wonder why she hasn't offered me this as a possibility... I am actually taking

by Santa (Oct 29)

Hi! Thank you for your kind wishes! You are lucky to have no harsh side effects!
Unfortunately, I think we might be reading the same google search results on Tasigna because I haven't found anything
Category: Uncategorised

Replies: 12

Last updated: 2 November 2023