You are here

Forum

Dupont on 4 January 2024

Category: Treating CML

Replies: 6

Last updated: 7 January 2024

Low blood phosphates 🤔
by Dupont (Jan 7)

Thanks again, this is reassuring to hear :). From what i understand, my haematologist would like to get me below 0.1% in the quickest way possible, his target for his CML patients is the TFR. I know

by Dupont (Jan 7)

Thanks again, this is reassuring to hear :). From what i understand, my haematologist would like to get me below 0.1% in the quickest way possible, his target for his CML patients is the TFR. I know

by Dupont (Jan 7)

Thanks again, this is reassuring to hear :). From what i understand, my haematologist would like to get me below 0.1% in the quickest way possible, his target for his CML patients is the TFR. I know

by Buzzm1 (Jan 6)

Dupont, I wanted to mention that at any PCR reading of 1.0 (CCyR), or less, CML presents no danger to the CML patient which provides you with justification for a possible TKI dosage reduction..
Buzz
Category: Treating CML

Replies: 6

Last updated: 7 January 2024
susannahclay on 7 November 2023

Category: Uncategorised

Replies: 15

Last updated: 28 December 2023

Just diagnosed today...anxious, scared, but hopeful?
by David787 (Dec 28)

Hello Susanna,
Welcome to the club! Probably not one that you thought you would ever join! The best thing you have done is join this site which provides invaluable support, help and information

by cehcsucf (Dec 19)

One side effect that can happen is blood loss, Watch out for anemia and joint subluxation. If that occurs, get back to your oncologist right away.

by cehcsucf (Dec 19)

Hi,
I was diagnosed 11 years ago at 68 and am now 80. I started with a WBC of 211 and a BCR/ABL1 of 91%. I still hike and play tennis. You will have a great and full life. Worry cannot bring it on

by Nimbus2 (Dec 14)

Hello
Regarding side effects, on imatinib, I had pretty severe muscle cramps. The cramps disappeared the day that I changed to dasatinib. The other strange effect was feeling ridiculously cold. I
Category: Uncategorised

Replies: 15

Last updated: 28 December 2023
David Fitz on 20 December 2023

Category: Uncategorised

Replies: 0

Last updated: 20 December 2023

CML Horizons 2023 Hybrid Videos & Presentations NOW Available!
by David Fitz (Dec 20)

CML Horizons 2023 Hybrid Conference was held from 3rd till 5th November in Berlin, Germany. The conference was a highly anticipated and successful event that brought together a total of 131
Category: Uncategorised

Replies: 0

Last updated: 20 December 2023
cehcsucf on 18 December 2023

Category: Getting help

Replies: 2

Last updated: 20 December 2023

B CR/ABL1 100%
by cehcsucf (Dec 20)

I have done a fair number of dose reductions and even periods of no meds to let my body recover. In fact, I stopped Scemblix today for a week and will start up at half my prior dose as I was having

by RC Kirk (Dec 19)

Hi Charlie, welcome to the forum!
I was also diagnosed in 2012 and have taken Gleevec, Sprycel and then back to Gleevec. I've never had serious side effects except for an episode of tachycardia

by cehcsucf (Dec 18)

Thank you all for providing a forum. I noticed the kindness of people and the openness of discussions.
I was diagnosed with CML in 2012. At that time my BCR/ABL1 was over 90% and my WBC was 211.
Category: Getting help

Replies: 2

Last updated: 20 December 2023
Ontasigna on 16 September 2020

Category: Side effects

Replies: 5

Last updated: 20 December 2023

Herbal Green Tea when on Nilotinib
by 3oK@ (Dec 20)

I don't think that drinking a cup or 2 of tea can have any effects on CML, but supplements definitely can and it's very complex and individual situation.
There are many signaling pathways on which

by sbp03 (Dec 19)

I recently came across the drug interaction section of NCCN's guidelines regarding herbal supplements. The text states that St John's Wort decreases the TKI's exposure in the body and Curcumin,

by Christine R (Sep 17)

I checked with my consultant about this years ago and she confirmed Green tea was fine. I also checked chamomile tea was ok too.
If in doubt ask your consultant. There are many websites with things

by alexmcpee (Sep 17)

Just avoid grapefruit but the nccn guidlines says avoid all the below on any TKI:
These include:
Turmeric
Gingko biloba
Green tea extract
St. John’s Wort
I
Category: Side effects

Replies: 5

Last updated: 20 December 2023
Evie on 5 December 2023

Category: About CML

Replies: 13

Last updated: 16 December 2023

Which brand of Imatinib
by AlastairC (Dec 16)

Pojo I discussed this with Prof Flanagan. He was convinced by their data that body weight was not the biggest factor in the variation. CYP3A4 is the major enzyme responsible for the metabolism of

by JoeP (Dec 15)

Probably the best way to take a TKI would be to have it tailor made to your body. That is not done at this time to my knowledge. From a layman’s perspective I believe that body weight plays a

by AlastairC (Dec 15)

A research group at KCH in London led by Prof RJ Flanagan did some work about 10 years ago on serum concentrations of imatinib, which showed that the level in different patients on the same standard

by Nimbus2 (Dec 15)

That is a good explanation.
When I took Imatinib generics, I did suffer different side effects from brand to brand, particularly gastro symptoms. Accord was the worst.
I believe that it is a fact
Category: About CML

Replies: 13

Last updated: 16 December 2023
Danmason11 on 8 November 2023

Category: Side effects

Replies: 3

Last updated: 10 December 2023

Imatinib side effects
by Wstevenson (Dec 10)

I agree with Pojo about the symptoms! Even in the short 6 months I've been diagnosed and on imatinib, my symptoms have evolved and changed. I no longer have fatigue or nausea, and digestive issues

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 JoeP (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: 3

Last updated: 10 December 2023
Alien69 on 8 November 2023

Category: About CML

Replies: 3

Last updated: 10 December 2023

Boosting immune system in chronic myeloid leukemia may lead to discontinuation of blood cancer drugs
by JoeP (Dec 10)

“ The story of the search for p53--the most important gene in medicine.” looks good. I think I may read it. Thanks!

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 JoeP (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: 3

Last updated: 10 December 2023
Lucky Utubor on 24 November 2023

Category: Blood tests

Replies: 1

Last updated: 5 December 2023

High platelet and benign tumor growth
by hannibellemo (Dec 5)

Hi, Lucky, I really don't know what to say about your platelet situation, sorry.
I'm going to throw this out there as a possibility for the benign tumors though. Because you are on dasatinib and

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: 1

Last updated: 5 December 2023
Loralie on 3 December 2023

Category: Reproductive health

Replies: 1

Last updated: 5 December 2023

Advice on use of interferon during pregnancy (any literature out there?)
by David Fitz (Dec 5)

Hi Loralie,
I would urge you to watch this video from Prof Apperley. She’s about the most experienced doctor in the world when it comes to CML and pregnancy.
https://vimeo.com/778953440
She’s not

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: 1

Last updated: 5 December 2023
MANNI OBEROI on 4 December 2023

Category: Children & young people

Replies: 1

Last updated: 4 December 2023

Abl bcr
by Buzzm1 (Dec 4)

MANNI OBEROI, which TKI are you taking, at what dosage, and for how long?
What is your age?
Congratulations on reaching undetected!
Buzz

by MANNI OBEROI (Dec 4)

My abl bcr undetectable
Category: Children & young people

Replies: 1

Last updated: 4 December 2023
JoeP 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 JoeP (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 JoeP (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
JoeP on 21 November 2023

Category: Side effects

Replies: 2

Last updated: 24 November 2023

Hypercholesterolemia with Tasigna
by JoeP (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 JoeP (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
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
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