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Ray Sell on 22 May 2020

Category: Blood tests

Replies: 4

Last updated: 23 May 2020

Lab change and my BCR/ABL numbers went up
by Ray Sell (May 23)

David thank you for all the information.
Ray

by David Fitz (May 23)

PCR is done on a machine and is a complex process, amplifying genetic code thousand and thousands of times. Newer machines employ different ways of doing it, so it’s not always directly

by Ray Sell (May 22)

David
Lab Corp: May 2018 B2A2 .0032 B3A2 0.1482 Sept 2018 B2A2 0.0032 B3A2 0.1123 Jan 2019 B2A2 0.1694
B3A2 0.1482

by David Fitz (May 22)

Hi Ray,
The IS system is not perfect, and not all labs are on the IS anyway and even those that are do not always report results on the IS. Mine, for example, is IS calibrated but reports local
Category: Blood tests

Replies: 4

Last updated: 23 May 2020
sandy craine on 23 May 2020

Category: Uncategorised

Replies: 0

Last updated: 23 May 2020

Your data is helping beat COVID-19
by sandy craine (May 23)

For those of you in the UK who are taking part in the COVID-19 Symptom Study, see the latest update below.
Dr Claire Steves and Professor Tim Spector delve into the latest data from the COVID
Category: Uncategorised

Replies: 0

Last updated: 23 May 2020
Mdcupp6201 on 21 November 2019

Category: Uncategorised

Replies: 9

Last updated: 23 May 2020

New to this
by Sharon7 (May 23)

Hi Matt,
How are you traveling with your CML now? Haven't been on here for a while, so thought I'd check in! It's a scary time for everyone atm with Covid19 around. My husband is going well.

by Mdcupp6201 (Nov 24)

Thank you Sharon. It’s been a huge help just being able to talk about it with people who understand. It’s so hard to tell people who don’t that I don’t feel fine when

by Sharon7 (Nov 24)

Hi Matt,
It is hard to accept that life a few months ago was relatively normal. We never thought we would have to face what we have just experienced this past month. However, we will remain

by Sharon7 (Nov 24)

Hi David,
Thanks for the link to your story it is hard to think that one day we will look back and not think so much of the turmoil we went through following diagnosis and the dark place we have
Category: Uncategorised

Replies: 9

Last updated: 23 May 2020
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