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WendyAR on 27 May 2020

Category: Uncategorised

Replies: 4

Last updated: 31 May 2020

Increased Sprycel dosage
by WendyAR (May 31)

I’ll be scheduling a video visit with my Specialist tomorrow so will definitely inquire about the PCR. I went through Test results and don’t see a test with either PCR or BCR-ABL1 ratio

by Buzzm1 (May 31)

WendyAR, you test every three months and your test results include a BCR-ABL1 ratio, expressed as a percentage, normally referred to as a PCR reading. If you aren't familiar with this, you

by WendyAR (May 31)

Hello -
I was told that a blood test they normally don’t order was done suggested increasing dosage. The nurse practitioner called stating that this test showed cancer cells so they want to

by Buzzm1 (May 29)

WendyAR, you certainly deserve to know a lot more as to why your dosage was increased to 140mg. I wouldn't wish 140mg of Sprycel on my worst enemy, nor the extreme dosage of any TKI.
Category: Uncategorised

Replies: 4

Last updated: 31 May 2020
Karthikeyan on 30 May 2020

Category: Uncategorised

Replies: 1

Last updated: 30 May 2020

Sweating problem with tasigna
by Alaina (May 30)

Hi there. I am prescribed Tasigna as well. Although I don't sweat all day or as soon as I start walking, I do experience flushing and sweating if the temperature is a little warm...mid to high 70s

by Karthikeyan (May 30)

Hello all,

I have some minor side effects with tasigna like extremely dry hair, dry skin, and bumbs on face.but the high amount of sweat is something i can't bear.i took imatinib 400 mg for
Category: Uncategorised

Replies: 1

Last updated: 30 May 2020
Alaina on 26 May 2020

Category: Uncategorised

Replies: 4

Last updated: 29 May 2020

Supraventricular Tachycardia
by Alaina (May 29)

Hi Kirk, Thank you for sharing. My cardiologist has me wearing a 24 hour monitor. He suggested I start taking a Calcium channel blocker and if the arrythmia happens again he will refer me to a local

by RC Kirk (May 29)

I had an episode of tachycardia last year when I was hiking in the wilderness. I had visions of dying on the trail, but I survived. I rested for about an hour, trying to get it slowed

by Alaina (May 27)

Alex,
Thank you for sharing that story. I am sorry to hear your sister went through it, but I feel better knowing I am not alone.

by alexmcpee (May 27)

Hi there,
I am on Tasigna and not had that issue yet but my sister had an SVT this year (no pre medical history) we were all worried sick. Apparently it’s very common she had observations for
Category: Uncategorised

Replies: 4

Last updated: 29 May 2020
johnw1001 on 27 May 2020

Category: Organising your life

Replies: 2

Last updated: 28 May 2020

What next for shielding after 30 June?
by alexmcpee (May 28)

The way I look at it the time since diagnosis has hampered life somewhat and I’ve decided not to let COVID add to an already stressful time. Of course I will keep 2 meters from people but I

by Nimbus2 (May 28)

Thank you, John. My summarisation of the situation would be exactly the same as yours.
I think the risk factors that you quote are entirely correct but not mutually exclusive and not mathematically

by johnw1001 (May 27)

Hi All,
I had a telephone consultation with my specialist a few days ago and raised the issue of what next for shielding after 30 June the date that the Public Health England advice runs to for all
Category: Organising your life

Replies: 2

Last updated: 28 May 2020
Craig747 on 27 May 2020

Category: About CML

Replies: 5

Last updated: 28 May 2020

Newly diagnosed with CML and uneducated
by snowman 35 (May 28)

I am a father of two children. I diagnosed before 4 years and I started treatment with Sprycel 100 mg with zerow side effects.

I know that is a little bit difficult to handle it at the

by Rick B (May 28)

Sorry you have joined this club. Scary at first. Confusing also. Starting any TKI has it's own side effects and you will need to be closely monitored. Cancer sucks. But after a while, you

by Craig747 (May 28)

Thank you Coloradoguy. I will be educating myself daily. FYI - I am also a Colorado guy having lived there for many years. I will continue to lean on my family and prayer.

by ColoradoGuy (May 28)

Also read up on Vitamin D3 and K2 among other supplements. There are many posts in the forum about it so do read up and see if it is for you. Take care.
Category: About CML

Replies: 5

Last updated: 28 May 2020
Tanya Cuffe on 26 May 2020

Category: Uncategorised

Replies: 6

Last updated: 27 May 2020

Detectable after being non?
by Tanya Cuffe (May 27)

Thanks for sharing that Rick,good to know others experience same...

by Tanya Cuffe (May 27)

Thank you for that Alastair,I feel quite uninformed still about CML,despite reading heaps about it,and my Haemotologist doesn’t help as she seems to just give me the most basic information...I

by Rick B (May 27)

I have been undetctable and then my last result read "too low to quantity." My hematologist said that sometimes there is a tiny upward bounce and to not wast any time worrying about it.

by AlastairC (May 27)

Tanya, I have seen quite a few posts like yours over the years, and as far as I remember none of them have actually been a long term issue. Very low results (less than 0.01%) turn up occasionally
Category: Uncategorised

Replies: 6

Last updated: 27 May 2020
Rick B on 27 May 2020

Category: Uncategorised

Replies: 0

Last updated: 27 May 2020

New Study for TFR
by Rick B (May 27)

https://www.nature.com/articles/s41375-020-0867-0
Category: Uncategorised

Replies: 0

Last updated: 27 May 2020
lupus on 27 May 2020

Category: Blood tests

Replies: 0

Last updated: 27 May 2020

Blasts in peripheral blood after 12 months of treatment (MMR reached 3 moths ago).
by lupus (May 27)

Hi,
may I ask how often is having 0,5 % blasts in peripheral blood after reaching MMR? I have been tested today and other blood parameters were ok. I am still waiting for todays PCR results, but
Category: Blood tests

Replies: 0

Last updated: 27 May 2020
Poppert on 25 May 2020

Category: Side effects

Replies: 1

Last updated: 27 May 2020

Dasatinib rash
by alexmcpee (May 27)

Hey there yes this is 100% normal and have exactly the same. I am on Nilotinib but all the drugs have the same effect. Some pubic hairs have grown back but it’s defo way less than it used to

by Poppert (May 25)

I’ve been on 100 mg dasatinib since November 2019. I’m having a bit of a problem with rash which won’t go away. It’s small red dots on arms and legs. I’ve also lost
Category: Side effects

Replies: 1

Last updated: 27 May 2020
jhorne1 on 12 May 2020

Category: Uncategorised

Replies: 13

Last updated: 25 May 2020

Dosage reduction
by mariatot (May 25)

Thanks again Scuba for your time and comprehensive responses. Very much appreciated. Will do a search when I get a free moment.

by scuba (May 25)

Hi David,
The key phrase is "C3 complex w/ bioperine". Sabinsa is the company which created the formulation.
The brand you list looks legitimate.

by David Fitz (May 25)

Wild West when it comes to this stuff ... the ads on Amazon and such are enough to confuse anyone.
I just searched Amazon UK for “Sabina curcumin” and this comes up as top result:

by scuba (May 25)

This is the type of Curcumin I take:
https://www.sabinsa.com/products-from-sabinsa/127-curcumin-c3-complex
Sabinsa licenses their formula to several manufacturers. Do an online search for "
Category: Uncategorised

Replies: 13

Last updated: 25 May 2020
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