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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
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
r06ue1 on 13 April 2023

Category: Clinical trials

Replies: 11

Last updated: 30 October 2023

Drug Combo of CML Medication + Misoprostol Works!
by JoeP (Oct 30)

My numbers were improved while I took Omeprozol (Nexium) a few years back while on Imatinib.

I was prescribed the Omeprozol because I developed serious acid reflux from dissolving my Imatinib

by 3oK@ (Sep 26)

Thank you for sharing the info. I tried 400 mcg a day for 2 months and did get much better results than with just Dasatinib. It was difficult to tolerate it and 2 x 200 was much less problematic

by ColoradoGuy (Apr 25)

I think he, and possibly most Oncologists tend not to prescribe anything that has not come out of clinical trial and approved for use in the scenario intended. I found the place where one of the

by r06ue1 (Apr 20)

Diarrhea is also common with Imatinib, but once you combine the two, it is much worse. I recommend taking it at night and not having to go into work the next day.
Category: Clinical trials

Replies: 11

Last updated: 30 October 2023
JoeP on 30 October 2023

Category: Clinical trials

Replies: 0

Last updated: 30 October 2023

Predicting TFR outcomes
by JoeP (Oct 30)

Just curious if anyone has read anything about a TIM3 protein that may be able to indicate to a high degree if a particular patient will respond well to TFR.

I attached two links apparently
Category: Clinical trials

Replies: 0

Last updated: 30 October 2023
Alan Locke on 27 October 2023

Category: Uncategorised

Replies: 0

Last updated: 27 October 2023

Cellulitis
by Alan Locke (Oct 27)

Occasionally, I have a swollen ankle as a side effect of my 400mg Imatinib. Usually, this recedes after a couple of days without too much concern.

However, recently this did not happen. After
Category: Uncategorised

Replies: 0

Last updated: 27 October 2023
Alan Locke on 25 July 2023

Category: Uncategorised

Replies: 1

Last updated: 27 October 2023

Eczema on the genitals
by Alan Locke (Oct 27)

Thankfully I am now in control of my eczema in a very sensitive area.

After a little trial and error, my doctor prescribed a thrush and eczema cream, that after a week worked!!

To

by Alan Locke (Jul 25)

link deleted
I hope gentlemen of the forum will find this interesting. I have an appointment with my doctor. Certainly more informed and more confident about treatment choice and hygiene care.
Category: Uncategorised

Replies: 1

Last updated: 27 October 2023
Karinne on 15 October 2023

Category: Uncategorised

Replies: 8

Last updated: 26 October 2023

5 years of TFR for me
by Karinne (Oct 26)

The only way to know is to try. Crossed fingers.

by hannibellemo (Oct 26)

Well, thank you! I'm planning on trying TFR in January. I hate to jinx myself, but I'm not particularly hopeful. My transcripts would rise so quickly whenever I had to stop dasatinib due to pleural

by Karinne (Oct 22)

Thanks Pat. How are you doing?

by hannibellemo (Oct 21)

Wonderful news, Karinne!
Pat
Category: Uncategorised

Replies: 8

Last updated: 26 October 2023
bendicco on 20 October 2023

Category: Uncategorised

Replies: 4

Last updated: 26 October 2023

RSV vaccine
by hannibellemo (Oct 26)

You're welcome, bendicco. Stay well!

by bendicco (Oct 23)

Thank you Pat! Not sure why I’ve been afraid to get it.

by Nimbus2 (Oct 22)

It takes some Googling to work out what is on offer in England. There appears to be a recommendation that the NHS could vaccinate infants and over-75.
Over-60s can be vaccinated privately at

by hannibellemo (Oct 21)

I had RSV last winter, I wouldn't wish it on my worst enemy! I wheezed, was short of breath, coughed my head off and this went on for a month. I ran to get the vaccine as soon as it became available
Category: Uncategorised

Replies: 4

Last updated: 26 October 2023
ColoradoGuy on 11 October 2023

Category: Treating CML

Replies: 1

Last updated: 16 October 2023

Great News For BC Treatment
by alexmcpee (Oct 16)

That’s amazing - let’s hope this gets off the ground as quickly as possible in the fight against progressive CML - another string in bow as they say.

by ColoradoGuy (Oct 11)

Not sure if this has been shared, but it is great news and I thought I would share.
https://www.businesswire.com/news/home/20231011243325/en/City-of-Hope-an...
Category: Treating CML

Replies: 1

Last updated: 16 October 2023
chrissie on 5 October 2023

Category: Uncategorised

Replies: 12

Last updated: 12 October 2023

Dosage change+ heart problem
by Wstevenson (Oct 12)

Thank you for this info!

by Mary Babbs (Oct 12)

Hi Chrissie ,

I was diagnosed with atrial fibrillation earlier this week . My ECG looked as if someone had been doodling on it as the line was so crazy ! My consultant has stopped my Ponatinib

by scuba (Oct 9)

Chrissie,

I would stick with magnesium supplements that are complexed with citrate, malate, turate or glycinate. The supplement you describe is more for laxative effects or as an antacid and

by chrissie (Oct 9)

Hi Scuba

First a massive thanks for the time you have spent replying to me.

I have looked high and low on the magnesium tablet box and leaflet to try to find out if it is oxide or not.
Category: Uncategorised

Replies: 12

Last updated: 12 October 2023