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Sharon7 on 23 May 2020

Category: Uncategorised

Replies: 0

Last updated: 23 May 2020

Update
by Sharon7 (May 23)

Hi everyone!
I originally posted last year when hubby was first diagnosed. It was a tough time as you all know and I just wanted to update on his progress so far and say how thankful we are to this
Category: Uncategorised

Replies: 0

Last updated: 23 May 2020
scuba on 13 February 2018

Category: Uncategorised

Replies: 29

Last updated: 22 May 2020

Fasting and Cancer ...
by Ontasigna (May 22)

How many days would it take to get back Normalized Bilirubin values after fasting.
Thanks so much for sharing your thoughts.

by scuba (May 21)

Yes, bilirubin can go up as blood cells are recycled (mostly white cells). This is more pronounced in men than women. As a fast continues, however, bilirubin should come back down as the liver

by Ellie Regina Grey (May 21)

Hello,
Welcome to the forum...
From my personal experience, yes, the bilirubin level normalized (in a clinical sense) which sits just above the 'paper normal'.
But, in the last quarter checkup, it

by Ontasigna (May 21)

Hi Scuba/Ellie,
I am on Tasigna sine an year. I did an intermittent fasting (18:6) for 10 days and when i chwcked my reports today my Bilirubin has shot up to 6mg (total) with direct 2.5 mg.
My
Category: Uncategorised

Replies: 29

Last updated: 22 May 2020
Nimbus2 on 9 December 2018

Category: Uncategorised

Replies: 13

Last updated: 21 May 2020

Generic Imatinib Compared With Gleevec in CP-CML: Patient Outcomes Across 3 Countries
by RC Kirk (May 21)

No I've never alternated days with the drugs. I did experiment with taking dasatinib one day a week and imatinib the others during the last three months and my recent PCR result was "

by Karthikeyan (May 21)

Hello RC Kirk

Are you talking dasatinib and imatinib in

alternative days.

by Nimbus2 (Feb 11)

I asked a senior consultant at a public meeting whether the differences in side effects between Gleevec and the various generic equivalents is real or perceived.
He replied that the basic imatinib

by johnh (Feb 10)

I have been taking 400mg Imatinib daily since 2005 and have been using generic versions since they became available. More recently I have been given a supply of Cipla 400mg capsules which look
Category: Uncategorised

Replies: 13

Last updated: 21 May 2020
Debs on 23 April 2020

Category: Getting help

Replies: 21

Last updated: 21 May 2020

Still no letter - consultant following the advice/Expert Opinion from the NCRI CML Subgroup,
by Debs (May 21)

Hi All,
Thank you for your replies and support. I had a wellbeing call from my GP practice the other day and they referred to my letter. When I told them I hadn't had one (I have previously

by AlastairC (May 12)

Useful telephone chat with my consultant just now. BCR-ABL 0.01% was 0.02% last test, all good. New bloods to be taken on Monday - they have set up an "in and out" testing service in their

by AlastairC (May 11)

Rather to my surprise I have this morning received the shielding letter from the Chief Medical Officer in Wales. It still says to shield until 15 June, so in my case the 12 weeks shielding is only 5

by Richard42 (Apr 30)

Thanks Sandy. I'm following the CML specialist advice and guidance as regards shielding.
For what it's worth, the Shielding Helpline called again today and I had a conversation with
Category: Getting help

Replies: 21

Last updated: 21 May 2020
ckquinn on 18 May 2020

Category: Blood tests

Replies: 3

Last updated: 19 May 2020

Hospital Appointment
by alexmcpee (May 19)

I was anxious too. Had blood draw 3 weeks ago and it was safe and well managed. I too wore a mask and gloves.
Have my PCR call with my consultant on Friday. If that wasn’t anxiety inducing

by ckquinn (May 19)

Thanks Denise, all went very well just bloods and medication today, very safe protocols in place. Even braved a visit to the on site Marks and spencer. Hope all is well with you, stay safe.

by Felix (May 18)

Hi, I am surprised your doctor isn't doing telephone consultations as mine did last week. A blood test appointment was made for me at a safer hospital where I don't have to enter the actual

by ckquinn (May 18)

Wee bit anxious about my first lockdown appointment at hospital tomorrow, BCR ABLE bloods due and I need to collect Dasatinib. I had been attending every 6weeks with the hope of coming off meds in
Category: Blood tests

Replies: 3

Last updated: 19 May 2020
Nimbus2 on 15 May 2020

Category: Uncategorised

Replies: 2

Last updated: 19 May 2020

HQP1351
by Nimbus2 (May 19)

Hello Sandy. Thank you, I was hoping that that would be the answer. That is another third line TKI in our armoury.

by sandy craine (May 19)

Hi,
It seems it is a newly developed 3rd Gen TKI by Ascentage Pharma...
HQP1351 is a novel, orally active, potent third-generation BCR-ABL inhibitor designed to effectively target BCR-ABL

by Nimbus2 (May 15)

A search here on HQP1351 gives no result. Is this a TKI we know about under a different title?
https://www.healio.com/hematology-oncology/leukemia/news/online/%7B0eb55...
FDA grants
Category: Uncategorised

Replies: 2

Last updated: 19 May 2020
scuba on 27 February 2018

Category: Food & fitness

Replies: 37

Last updated: 19 May 2020

Fasting and Cancer part 2
by scuba (May 19)

24 hour fasts are not sufficient. You must be in ketosis in order for stem cell based autophagy to kick in. According to Dr. Longo, it takes 3 days of fasting for stem cell based immune system

by deonlee (May 19)

In your opinion, is there an "optimal" fast that one would try to achieve? I'm quite comfortable with 24hr fasts but I'm wondering is this enough to induce effective autophagy and

by onekayaker (May 19)

No need to answer. I saw after I posted your responses to others. Ty

by onekayaker (May 19)

No need to answer. I saw after I posted your responses to others. Ty
Category: Food & fitness

Replies: 37

Last updated: 19 May 2020
vonnie on 16 May 2020

Category: Drug-drug interactions

Replies: 3

Last updated: 18 May 2020

amoxicillin
by David Fitz (May 18)

Amoxicillin is not the strongest of antibiotics around, so if it didn't work the first time it might not do much the second time for the same infection.
Amoxicillin and metronidazole are

by onekayaker (May 17)

Sometimes a stronger string of antibiotics are needed. This has happened to me in life life twice and the second one cleared me up. I was treated for respiratory infection and the Amox

by johnw1001 (May 16)

Hi,
Presume that you are on one of the tkis and that the mouth infection is related to a tooth.Amoxycillin is the standard approach from dentists for infections of the mouth.A while back I had

by vonnie (May 16)

Hi not been on for a while but would really appreciate if someone can tell me if i can take two courses of amoxicillin in a month as i had one prescription for a mouth infection but it doesnt seem
Category: Drug-drug interactions

Replies: 3

Last updated: 18 May 2020
onekayaker on 17 May 2020

Category: Uncategorised

Replies: 7

Last updated: 18 May 2020

Blue cheeses......
by David Fitz (May 18)

You'd want to ear a lot of pomegranate to cause a problem - there's a reason it's not on the patient insert leaflets. Seville oranges are very bitter, and you wouldn't want to eat

by onekayaker (May 17)

Hey David ,
I did see where someone pregnant is at risk. Feta was also on the lists of cheeses to avoid. I had been caving in on those cheeses so ergo this thread. I did know

by David Fitz (May 17)

It’s nonsense. We are perfectly able to eat those things.
People get freaked about food and CML - in my opinion it’s because if they feel they control what they eat or do not eat then

by onekayaker (May 17)

The strawberries are at their best. One covers the palm of my hand and deep red and juicy. Sugar is not needed. I took pictures and sent them to friends in WV.....they are
Category: Uncategorised

Replies: 7

Last updated: 18 May 2020
David Fitz on 17 May 2020

Category: Uncategorised

Replies: 0

Last updated: 17 May 2020

Chronic myeloid leukemia and the use of tyrosine kinase inhibitors in the days of COVID-19 pandemic
by David Fitz (May 17)

Very interesting journal letter that our friends at CML Advocates Network shared today.
It is short on data, but suggests that from what is known patients in chronic phase CML taking TKIs are not at
Category: Uncategorised

Replies: 0

Last updated: 17 May 2020
koralia.pappi on 12 May 2020

Category: Uncategorised

Replies: 11

Last updated: 17 May 2020

Undetectable!
by onekayaker (May 17)

Grats Kora!

Steff

by mamodei (May 14)

Wonderful news!
Maria

by koralia.pappi (May 13)

Thanks, snowman!

by snowman 35 (May 13)

That's wonderful news koralia!! I am so happy for you!
Category: Uncategorised

Replies: 11

Last updated: 17 May 2020
Rick B on 6 August 2018

Category: Uncategorised

Replies: 22

Last updated: 16 May 2020

Newly Diagnosed and Have to Already Stop Imatinib
by AlastairC (May 16)

Hi Sally; this was so long ago the other TKIs were not yet fully released. It was the way I was; imatinib hadn't caused the neutropenia.

by Sally Martin (May 14)

Thanks for your reply Alistair. Did you ever try a different drug to see if this would raise your neutrophils? My haematologist said that I’m someone who seems very sensitive to imatinib and

by AlastairC (May 12)

Sally, you'll find my history with WBC and neutrophils half way up this thread. One of the haematologists who investigated my WBC pre CML and my first CML consultant both said that low WBC is

by Sally Martin (May 12)

Hi there. I have been reading with interest the posts regarding imatinib and low neutrophils. I was diagnosed with CML last November. I had an initial optimal response to imatinib (400mg) but after
Category: Uncategorised

Replies: 22

Last updated: 16 May 2020
Sandrahervieux on 13 May 2020

Category: Treating CML

Replies: 6

Last updated: 16 May 2020

Side effect of Imatinib?
by kat73 (May 16)

Don't know how I missed this - sorry. Yes, yes, yes, to all your feelings and symptoms. I did, indeed, have them on imatinib. All comments you've received are great.

by Felix (May 13)

Hi Sandra ,I had most of those side effects plus really bad diarrhoea ,hooded eyelids and a rash.I thought that was just how it was going to be on Imatinib.Some did subside over time .I was changed

by johnw1001 (May 13)

Sandra,
I found the first six months after diagnosis to be quite challenging.The bone pain led to some sleepless nights but as one medic said to me the drug is doing its job and your bone marrow is

by AlastairC (May 13)

Hi Sandra, at 3.5 months a lot of the imatinib side effects (bone pain, fatigue etc), drop off to an acceptable level for many patients.Some have to change to another TKI. Despite these not being
Category: Treating CML

Replies: 6

Last updated: 16 May 2020
David Fitz on 14 May 2020

Category: Treating CML

Replies: 4

Last updated: 16 May 2020

Case report of CML and COVID-19, dasatinib (and imatinib) may be protective
by kat73 (May 16)

Now we're talkin"! All right! This would please me no end - we have a superpower!

by alexmcpee (May 14)

Very interesting read. I am on Nilotinib and as far as I understand very similar (more powerful) than imatinib. It did mention it against SARS in this doc too.

by Nimbus2 (May 14)

Thank you for posting, David. I understand that dasatinib is a broad-based kinase inhibitor. It appears here that the inhibiting of Abl1 and Abl2 pathways may be helpful. Perhaps it is early

by Dustylloyd (May 14)

Hi David,
in February this year my wife who I’ve been married to for 36 years was totally flattened by some virus and had to take 2 weeks off work, she was having really bad headaches, very
Category: Treating CML

Replies: 4

Last updated: 16 May 2020
vonnie on 16 May 2020

Category: Uncategorised

Replies: 0

Last updated: 16 May 2020

amoxicillin
by vonnie (May 16)

Hi not been on for a while but would really appreciate if someone can tell me if i can take two courses of amoxicillin in a month as i had one prescription for a mouth infection but it doesnt seem
Category: Uncategorised

Replies: 0

Last updated: 16 May 2020
jriccoboni on 12 May 2020

Category: Uncategorised

Replies: 4

Last updated: 15 May 2020

Dentist
by KeriF (May 15)

Can you require all of your patients to be COVID tested prior to treatment? Are you able to wear a PAPR or at least a fit tested N95 while at work? I’m asking because I don’t know

by Busaboy (May 13)

Hi, I'm not a dentist but I'm a repair tech i.e; schein, benco, patterson guy, and I've continued to work in mechanical rooms, work on op floors, handle equipment for the past 7 years with no

by jriccoboni (May 13)

In the US and I am the employer

by alexmcpee (May 12)

Hi if you are based in the UK you are in the high risk group and I doubt an employer would except you back anyway.
All the best
Alex
Category: Uncategorised

Replies: 4

Last updated: 15 May 2020
AlanG on 14 May 2020

Category: Uncategorised

Replies: 5

Last updated: 15 May 2020

Ponatinib for blast crisis
by AlanG (May 15)

Hello.
Thanks for the response, and good to hear that this drug works for someone else.
Regards,
Alan

by AlanG (May 15)

Dear Nicola,
There were no mutations detected, which my consultant said was good, but I wonder about that, as presumably it means that they don't know why I went into blast phase. IT was all

by nicolaclubb (May 15)

So sorry to hear you have gone into blast crisis. Do you know if it was due to a mutation?

Im currently on Ponatinib 15mg, due to mutation. I was previously on Nilotinib.

by ColoradoGuy (May 15)

I do know of someone who developed T315I and has been on Ponatinib for 7 years all around PCR 0.02.
Category: Uncategorised

Replies: 5

Last updated: 15 May 2020
Ontasigna on 10 May 2020

Category: Treating CML

Replies: 2

Last updated: 13 May 2020

Intermittent Fasting and acidity
by Ontasigna (May 13)

Thanks Scuba!

by scuba (May 10)

I have had zero acid reflux during fasting. I do get the "rumbles" as our bodies are trained to expect food at certain times of the day and begin secreting digestive enzymes in

by Ontasigna (May 10)

Hi Scuba
I have read many of your posts on intermittent fasting and its benefits.
I read an article which states- one of the side effect of IF is increase in stomach acid causing acid reflux and
Category: Treating CML

Replies: 2

Last updated: 13 May 2020
Tricky109 on 8 May 2020

Category: Uncategorised

Replies: 8

Last updated: 12 May 2020

Shielding (Sorry!)
by Tricky109 (May 12)

Thank you David I agree always best to be on the safe side.

by David Fitz (May 12)

Tricky one ... but it will never be 100% safe, so you need to work out your own risk tolerance.
My kids aren't school-age yet, but if the question to me was would I send them to nursery on the

by Tricky109 (May 10)

Thank you for your replies, can I add to my question? Im shielding until safe 100% what are your opinions on as I have 2 young primary age children when the goverment announce tonight schools

by Dustylloyd (May 10)

Just watched the video David recommended and as far as I’m concerned the thoughts of professor Steve o Brian nailed the questions of shielding, should I, shouldn’t i, like Steve says he
Category: Uncategorised

Replies: 8

Last updated: 12 May 2020
Kathrynk on 1 May 2020

Category: Side effects

Replies: 8

Last updated: 11 May 2020

Just diagnosed this week, wondering about side effects of desatinib
by lloyd152 (May 11)

Hi,
I'm sorry to hear you've been diagnosed with CML but hope you can take comfort from the stories on CML Support. I'm 32 and have been on Dasatinib since I was diagnosed at 21. I

by DanielSingapore (May 10)

I am 54 and I was diagnosed with CML (Advanced Phase) on Sept 2019 and have since been on Dasatinib.
I have also achieved Cytogenetic Remission in Feb/March 2020 and have commenced back at

by snowman 35 (May 2)

Everything is gonna be just fine! I think you will start at 50-75mg .keep us informed about your progress!

by KeriF (May 1)

Hi Kathryn, I was diagnosed a year ago at 29. It was a shock to me as well (especially since I had lost health insurance four days before but that’s a story for another day).
I haven’t
Category: Side effects

Replies: 8

Last updated: 11 May 2020